AP doc or LLMD?

[tainabell]

Hi all,

So on Friday I went back to my AP doc for the first time after my Lyme diagnosis. I had been on 100mg doxy twice a day for almost a month with no real change in symptoms except increased nausea/headaches (which may or may not be herxing?).  Someone from here had sent me Dr. Burrascano's 40 pages of guidelines which I had read through and highlighted diligently. 

One of the things that both Dr. B and some people on this board have recommended is higher levels of doxy – Dr. B says you need at least 300mg a day to have results.  So I mentioned this to my doctor and she said that because I've been so sick with the doxy already, she thinks that my body just wouldn't tolerate the higher levels.  So she didn't feel comfortable upping the dosage.

We also had a good discussion about the IDSA versus the ILADS.  She said as far as the two camps go, she's somewhere in the middle.  She thinks Lyme is definitely underdiagnosed, that the testing is totally inadequate, and she believes that Chronic Lyme is a real problem.  But she thinks that sometimes ILADS doc sometimes go overboard on their treatment – she said she's seen people on years of IV antibiotics for Lyme with no noticeable change. 

As I've mentioned before, I really like and respect this doctor a LOT.  She got me the tests from IGENEX, and she is regulating my diet and supplements, keeping a close eye on things that all my other doctors had basically just ignored before.  But she has now sort of admitted that she's not a true LLMD in the traditional sense.  She also very openly said that if I want her to, she will refer me to docs who are LLMD, who will treat me according to Dr. B's guidelines. 

Right now, she and I have agreed to go 3 months on the current doxy treatment and then reevaluate.  I worry though, that those three months will be time wasted that I could be getting more aggressive treatment. 

What do you all think?  Should I go to see a LLMD?  Or should I just stick with this doctor who I know that I like and respect?    

[Kim]

That would be a tough call for me because I'm very loyal to doctors I connect with, but Lyme is a bugger to treat and requires a specialist.  Maybe if you found a LLMD that you liked, he/she would be willing to work with your AP doc.  You should have choices in New York.

[Maz]

[user=854]tainabell[/user] wrote:

So I mentioned this to my doctor and she said that because I've been so sick with the doxy already, she thinks that my body just wouldn't tolerate the higher levels.  So she didn't feel comfortable upping the dosage.

Hi Tainabell,

Did your current AP doc test you for coinfections, like babesia, bartonella, ehrlichia, mycoplasma, chlamydia pneumoniae, etc?

Nausea with a diagnosis of Lyme may be related to one of the other infections that ticks pass along…not the borrelia, necessarily. Babesia is a very common coinfection in the NE US…I think I read somewhere that 60% of ticks carry babesia in this region. Babesia is a protozoan infection and requires specific medications, such as Mepron, Flagyl and/or a chloroquinine, such as Plaquenil (the quinines were originally designed to treat malaria, another protozoan infection).

It's the coinfections which can impede progress on the tetracyclines. One might improve to a degree…maybe go into remission…but these coinfections will often seize the opportunity to come out of the woodwork when the prevailing infection starts to recede.

Ticks are like garbage cans…they have a number of hosts in their two year life span, moving from small hosts like the white-footed mouse, to raccoons, squirrels, and whatever else they attach to, before landing on a deer. So, depending on whatever hosts they've been feeding on, they will carry whatever infections those hosts harbor…and then ultimately pass it on to us. Sometimes people only get associated tickborne infections and not borrelia, at all….which can complicate things further. This in one of the reasons people may test negative for Lyme, but they are still very sick with one of these coinfections.

Doxy in high doses can be hard on the stomach, so your doc is right about that. However, the nausea 'might' be the result of another coinfection. If your current doc didn't test you for these other coinfections, you might want to consider the option of seeing a Lyme Literate physician in New York. There are some very good ones in the city. Might be worth an initial workup just to get a second opinion about your current meds and possible coinfections that may be complicating your picture. As Kims mentioned, Lyme is a very complicated disease.

Also, while your doc is right that LLMDs tend to take an aggressive approach to the Lyme pea soup, you might want to send a PM to “lvento” about her LLMD in NYC who apparently takes a much more conservative approach to antibiotic combo dosing. I know his name, but I don't have his contact info, but I'm sure she'd give you this info. 😉 Apparently, he's ranked as the #2 LLMD in the US.

I know what a difficult decision it is, deciding which way to go with treatment. I went through exactly the same thing. Looking back in retrospect, I'm glad I covered the coinfection corners in my first year on Lyme protocols, before starting AP. As with all things Lyme, it's no guarantee, but I think it paved the way to making my experience on AP this past year so successful. I consider myself really fortunate, as my LLMD, although normally aggressive in his approach, is also open to doing whatever it takes to get me well, including letting me try AP when I started to become so hypersensitive to high dosing last year. It's also comforting to know that should I start to backslide, he isn't afraid to pull out whatever it takes to bring any lingering coinfections back under control.

 All the best in your decision-making process!

Peace, Maz

[tainabell]

My doctor was going to test me for the coinfections, in fact she said me to Park Madison Labs with a scrip for testing them, BUT when I got there, they told me if I wanted to get all the tests (WB, Arthritis Panel, + Tick Borne panel), it would cost like $900 which I couldn't afford.  🙁

Now I see, however, that it might be important to get the coinfections panel as well. 

Funny that you say that about nausea, because I actually had frequent nausea for about a year and a half BEFORE all this nonsense started with my arthritis and hives.  At the time, my husband (then boyfriend) was in Ireland and I was in MA, so afterwards I chalked the constant nausea up to “lovesickness” :blush: It did go away when he moved over here to stay.  In retrospect, I think that it may have been a “flare” of my Lyme/whatever that was triggered from the stress of being apart. 

Isn't strange how often we treat our illnesses/symptoms as if they are completely separate from one another?  I would have never linked that nausea to arthritis if I hadn't been sort of forced to through the Lyme dx.  I also have had headaches for a long time, but I always just considered myself sort of a “headachy” person, never thought that something could be CAUSING those headaches. 

Anyway, thanks for the tip Maz.  I will PM lvento right after I send this off. 

[Maz]

[user=854]tainabell[/user] wrote:

Funny that you say that about nausea, because I actually had frequent nausea for about a year and a half BEFORE all this nonsense started with my arthritis and hives.  At the time, my husband (then boyfriend) was in Ireland and I was in

 

Tainabell, you have quite a bit in common with lvento in this context…the nausea and headaches and Lyme dx. One suggestion, but I don't want to influence your decision either way as this is a lot of money….the $900 panel for Lyme bloodwork is excessive. I believe Kim had this done through IGeneX and later regretted it, but she can tell you more about this. These coinfection tests should be covered by your insurance through a standard lab.

The other thing to consider is that although initial consults with Lyme docs can be in the $600 to $900 out of pocket range, they don't rely on any testing for a diagnosis of Lyme or coinfections and will base treatment upon how your symptoms are presenting.

I am not a doctor, but I know that babesia is related to headaches, fevers, sweats, nausea and some neurological signs and symptoms. A Lyme doc would automatically treat you based on those symptoms, with or without the tests.

I know…hard decisions…:sick: 

Peace, Maz

[Kim]

[user=27]Maz[/user] wrote:

Tainabell, you have quite a bit in common with lvento in this context…the nausea and headaches and Lyme dx. One suggestion, but I don't want to influence your decision either way as this is a lot of money….the $900 panel for Lyme bloodwork is excessive. I believe Kim had this done through IGeneX and later regretted it, but she can tell you more about this. These coinfection tests should be covered by your insurance through a standard lab.

My Lyme doctor said the testing for co-infections is not that accurate or reliable because there are so many strains not being tested.  You can get the basic Western Blot from Igenex for around $200.  You can check the price list at their website.  My insurance, so far, is paying for everything so I'm feeling like one of the lucky ones.

Good luck and take care…..kim

[Maz]

Kim, thanks for filling in the gaps here. I thought you had your coinfections tested through IgeneX, but now remember you had it all covered by your insurance. Thanks!!!

Hope all is well with you…is the herxing a bit more tolerable now? I've been hoping your sis is feeling better, too, after her bouts with pneumonia.

Peace, Maz

[Kim]

[user=27]Maz[/user] wrote:

Kim, thanks for filling in the gaps here. I thought you had your coinfections tested through IgeneX, but now remember you had it all covered by your insurance. Thanks!!!

Hope all is well with you…is the herxing a bit more tolerable now? I've been hoping your sis is feeling better, too, after her bouts with pneumonia.

You are correct, Maz, I did have the coinfections tested through Igenex.  I ordered all the tests on my own prior to lining up a LLMD, then went to my appt with results in hand.

The Lyme tx is hell.  I feel horrible.  Exhausted, can't sleep, intense itching, irritable, joint pain, brain fog, etc.  One interesting tidbit is that I bough an infrared sauna to help with the detox and it is actually working too well.  When I get out of it my body is like a roadmap of where the heaviest load of infection is — neck and knees bright red.  I also had a stress fracture in my tibia following a knee replacement that has never totally healed.  Bartonella apparently has an affinity for the tibia and that area is also bright red after the sauna.  The sauna makes me herx so if I can wipe out a certain percentage of bugs with the heat then I should be able to shorten the time on abx (she said hopefully ;)).  My doctor said heat kills Lyme, but it thrives in cooler body temps — probably why so many of us who are hypothyroid are taking longer to get better.

Thanks for asking about my sister.  She's not running any marathons either.  Upon my urging, she agreed to Lyme testing from Igenex and hit on a couple of bands.  Well you know me……I then told her she really should see a LLMD.  As we speak, she is at the appt and I'm dying to hear how it's going.  Get this, I made her take our dad too because he's been diagnosed with Parkinson's which I've always wondered if it was undiagnosed Lyme.  He's had multiple tick bites over the years and had multiple bull's eye rashes.  I'll feel awful if they go to all this trouble to humor me and it doesn't go well.  These are 2-day appts and a 4-hr drive from where they live.

I'll let you know if I've been disowned by my family. :crying:

[Maz]

[user=40]Kim[/user] wrote:

The Lyme tx is hell.  I feel horrible.  Exhausted, can't sleep, intense itching, irritable, joint pain, brain fog, etc. 

My doctor said heat kills Lyme, but it thrives in cooler body temps — probably why so many of us who are hypothyroid are taking longer to get better.

Get this, I made her take our dad too because he's been diagnosed with Parkinson's which I've always wondered if it was undiagnosed Lyme. 

I'll let you know if I've been disowned by my family. :crying:

Oh, Kim…boy, do I know how you feel. This is exactly how it was for me in the beginning of Lyme treatments, too, although you're getting the skin itching and I had intolerable joint pain. The worst time was the first three months and then it started easing off in increments. I hope this is the pattern for you, too. Once you get these coinfections packed away, maybe you can just revert to AP again?

Yes, my doc talked about heat killing the spirochetes, too…he was upset that the PT sent me to a cold pool for pool therapy. He said it needed to be hot water therapy…as is hot tub hot. We don't have one of those around here, so I had to just sit in the jacuzzi at home and then get my hubby to stand on the side of the bath and lever me out! I couldn't bend my knees at all in the beginning.

Wow, you're a one, Kim, getting your family all sorted out!!! I really admire you ability to move and shake things with your family members. It all comes down to them listening and taking it on for themselves, so I guess it also says something about your sis. I've tried and tried with my brother, sending him all kinds of info on MS and anibiotic therapy, but he just believes his neurologist that it's not caused by an infection. I don't know what's harder…worrying that your family is following your recommendations and that it will work for them or worrying that they won't listen and they've run out of all other options. :crying: The way I look at it, either way, is that all one can do is offer the info…then it is entirely up to the other person to take responsibility to research for themselves and then make their decision.

So, I await your news of whether or not you've been excommunicated from your family…though I can't see it happening. You're too sweet and kind and only have their best interests at heart. 😉

Peace, Maz

[Kim]

[user=27]Maz[/user] wrote:

So, I await your news of whether or not you've been excommunicated from your family…though I can't see it happening. 

OK, I talked to my sister last night and they are all still speaking to me. 😕  The LLMD said my sister does, in fact, have Lyme (probably infected from when they lived in Pennsylvania about 15 yrs ago).  Here we go again — this is sounding like a broken record, learning that all these problems started with a tick bite.  Another Lyme/SD combo.

Due to all the resistance obtaining the Lyme test for my Dad, he went to the appt without test results.  They want to do a therapeutic probe with abx on him and if he has Lyme, he'll feel worse.  Continuing to butt in, I asked my sister to have them draw blood from him today and send off for the Western Blot.  His two Parkinson's doctors were so rude and obnoxious when asked if they thought he could also have a Lyme infection.  They actually said, “Lyme is a fraud”, and wouldn't even discuss it.  A test confirmation would help him be more compliant in tx, and would also maybe be a learning experience for those two docs. :roll-laugh: Just kidding, we know they never change their spots.

Maz, maybe I can work on your brother and you can deal with my family.  The family ties do make this harder.

Next week we're going to Chicago to spend Christmas with the grandkids which will be the perfect distraction.  Baby therapy with 3-yr old twins and a newborn make you forget about all your problems.  Can't wait.

I'll let you know if there is any more family drama after they see the doctor again today. :doh:

[tainabell]

[user=40]Kim[/user] wrote:

The Lyme tx is hell.  I feel horrible.  Exhausted, can't sleep, intense itching, irritable, joint pain, brain fog, etc. 

I totally sympathize, Kim!  This is what I'm going through right now too.  Fortunately, I can sleep, but I'm EXHAUSTED.  I hit a wall about three o'clock in the afternoon and from there on in I'm basically just not functional. 

Good luck, Maz and Kim, with your family members! They are lucky to have family members who care so much about their health and who are so well informed.  I hope all goes well!

[casey]

Geez, Maz and Kim,

Can i join this family thing? Here , my mom is suffering severely with lupus, heart attacks, stomach probs, cramps , you name it ,she has it. So when i i told them that my son and i have celiac and it it often hereditary, they think i am full of you know what and that it doesnt even exist. So now when we go for Christmas and bring our own food,( and this happens EVERY time we go) we get the joy of listening the whole time that we are full of you know what , just eat all the food and stop being stupid. Believe me, these conversations are never spoken in a nice way in their part and in reality, it is more stress going to visit them than not but i keep saying to myself when i am there , “patience, understanding and forgiveness”. But no matter how much i try , i only have so much of this.

For me, i can only try and direct them with some of what i have learned, they refuse to listen and me and i just feel guilty because they are getting older, neither are well and we wont have that much longer together however, there is no joy in visits, just stress. I literally no longer what to go because i know at the first meal, there is an issue.

It is bad as this, the last time we were there, my father tried to tell my son that his mother and the docs are crazy, he can eat gluten , it just a myth and proceeded to give him granola bars which my son loved before diagnosis.My son is 13 and smart enough to know better so when he turns the offer down, my father puts him down.

I felt like venting about that when i read other parts of this thread. Thanks for listening as this part is really tough for me!

Casey

[Kim]

Well, Casey, I'm listening to you.  Because of you, my Celiac test kit should be in the mail today.  I'm warning y'all right now, if I test positive, you'll see even a crankier Kim.  Since my sister tested positive, I don't even know why I'm bothering with the test!

Holidays seem to bring out the best and the worst in people.  We need to be good role models for our kids so they will take care of us when the time comes. :blush:  Have a glass of wine (or two) and try to just bite your lip.  They are dug in with their beliefs and so are you so there is no point in arguing.

More family drama.  I'm sure everyone can relate. :X

p.s.  Susan is going to have to work a little harder on me with the coffee enemas.  Do you know there is actually a website coffeeenemas.com.  Maybe if it reduces my desire for coffee, that would be a good thing.  Think of the possibilities — chocolate cake enemas, pizza enemas……..oh, the possibilities!

[Mumof3]

Get this, I made her take our dad too because he's been diagnosed with Parkinson's which I've always wondered if it was undiagnosed Lyme.

[Kim]

[user=869]Mumof3[/user] wrote:

Can Lyme disease lead to Parkinsons? My mum has Multiple System Atrophy (Shy Drager) which is a Parkinson Plus disease. It is a horrible progressive neuromuscular disease that has her in a nursing home at 68. When we didn't know what was wrong with her years ago, we thought it could be Lyme disease. I didn't know Lyme could lead to Parkinsons.

My Lyme doctor says Lyme can mimic or cause any disease.

[Author]

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