[Healthgirl]

$1200 Ouch!
It was a 1.5 hour consult and he went over all my paper work.
He asked me several questions and was pretty knowledgeable about many things that are out of his category (unlike most of the docs I've seen). I am glad I went, but I am really not sure what to do.
It was easy to gather that he feels that bacteria are the etiology of autoimmunity. He feels that I have Bartonella. He went way back in my history and was interested in many things that I thought were irrelevant.
He said that lyme is easier to treat than bartonella but he's helped people with certain antibiotics and that antifungals can work but that the therapy can take a year.
I told him I couldn't consider neurotoxic drugs because of my condition (small fiber neuropathy- autonomic dysfunction...) and he felt that tetracycline and an anti fungal would be a good combo. I am not ready to do anything yet.

Some of the questions he asked me were things I forgot to even mention to him such as...Do you have myoclonic jerks? When-at night? Is your vision blurry? Do/did you have diarrhea? Sensitivity to lights and sounds? Yes Yes Yes and yes to almost everything.

I am going to think about it and research and speak to my primary doc. He doesn't know what the heck to do either though so probably no point.

The lyme doc is sending me for more blood tests. He said there are so many strains of bacterias that don't show up on Quest testing so he doesnt even think its worth it but he ordered it anyway along with several other tests to look at my red blood cells. He seems to be the only doctor who is curious as to why my ferritin is so low and why my copper is deficient. He is testing for deeper red blood cell problems and said maybe I should see a hematologist.
I must admit that I went in with the attitude of "of course this guy is going to say I have lyme with all my symptoms and go on about how flawed the CDC testing is", but yet I felt it was necessary to explore this option as no one has been able to help me.

What I find to be convenient though is this: my neurologist strongly believes that I have sjogrens. My Rheumatologist mostly feels that I do. My lip biopsy was borderline and with my SFN (significant on biopsy) and autonomic dysfunction, dry eyes, joint and muscle pain, it is all they can conclusively arrive at.

SoThey want me to try Plaquenil. Lyme doc said plaquenil in conjunction with antibiotics can fight Bartonella. He said the plaquenil should give me a herx after about three weeks if it is lyme/bartonella where as if it isn't -it won't. I have no worries of placebo so I am feeling very inclined to try since it would be the therapy either way. I just hate medicine, but I don't know what I have to loose. I want my life back. I'm so freaking confused and have much to absorb as this was just last night that I got back from the appointment.
What do y'all think?

[zkrp01]

Originally Posted by Healthgirl

$1200 Ouch!
It was a 1.5 hour consult and he went over all my paper work.neuropathycan fight Bartonella. He said the plaquenil should give me a herx after about three weeks if it is lyme/bartonella where as if it isn't -it won't. I have no worries of placebo so I am feeling very inclined to try since it would be the therapy either way. I just hate medicine, but I don't know what I have to loose. I want my life back. I'm so freaking confused and have much to absorb as this was just last night that I got back from the appointment.
What do y'all think?

Use the search function here for Plaquenil and others experiences may help but keep that grain of salt as we all like to gripe. Ken in Texas.

[canagirl]

I have had a blood test for lyme and bartonella that came back negative. however, everywhere I look it seems that only Lyme Dr's have the ability to diagnose someone with lyme disease. Isn't this weird? What are they doing that neuro's aren't? Why does their testing come up positive but everyone else's comes back negative. Is it a hoax? Are they just treating people for the money? I ask because I wonder if I should travel to the US for a consult with a lyme dr. Here in Canada Lyme is hardly ever diagnosed, it seems to be swept under the rug a lot. I know someone who was finally diagnosed with lyme here but it took 3 years and he was in a wheelchair because he was so weak and fatigued (along with other things)

[Tunaboy]

I had some inconclusive lyme results from my initial labs. I'm wondering if I should see a lyme doctor. But I dont have most of the symptoms related to Lyme, like the bullseye rash, etc. Just tingling, buzzing, and a little burning. Occasional joint aches that go away after a few minutes. Very strange.

[Healthgirl]

Originally Posted by canagirl

I have had a blood test for lyme and bartonella that came back negative. however, everywhere I look it seems that only Lyme Dr's have the ability to diagnose someone with lyme disease. Isn't this weird? What are they doing that neuro's aren't? Why does their testing come up positive but everyone else's comes back negative. Is it a hoax? Are they just treating people for the money? I ask because I wonder if I should travel to the US for a consult with a lyme dr. Here in Canada Lyme is hardly ever diagnosed, it seems to be swept under the rug a lot. I know someone who was finally diagnosed with lyme here but it took 3 years and he was in a wheelchair because he was so weak and fatigued (along with other things)

I don't know what to think either. I don't think its a hoax. I think that there are a lot of researchers who believe that autoimmunity, cancer, neurological illnesses are triggered by either environmental pollutants or viral or bacterial causes. The lyme docs are fixated on the bacterial parasitic causes. The problem is that there is proof either way that each can be the cause.
For many of us it's a roll of the dice. Idiopathic sucks!

[Healthgirl]

Originally Posted by Tunaboy

I had some inconclusive lyme results from my initial labs. I'm wondering if I should see a lyme doctor. But I dont have most of the symptoms related to Lyme, like the bullseye rash, etc. Just tingling, buzzing, and a little burning. Occasional joint aches that go away after a few minutes. Very strange.

That doesn't matter. This dr. told me he treats clinically.
It seemed like the buzzing, tingling, burning, migrating joint pain was something he hears pretty often.

[Healthgirl]

Originally Posted by zkrp01

Use the search function here for Plaquenil and others experiences may help but keep that grain of salt as we all like to gripe. Ken in Texas.

Tell me what you know Ken!
I searched and it goes on for a million years. I could only find that it didn't help. I take everything with a grain of salt.

[Neuroproblem]

Originally Posted by canagirl

I have had a blood test for lyme and bartonella that came back negative. however, everywhere I look it seems that only Lyme Dr's have the ability to diagnose someone with lyme disease. Isn't this weird? What are they doing that neuro's aren't? Why does their testing come up positive but everyone else's comes back negative. Is it a hoax? Are they just treating people for the money? I ask because I wonder if I should travel to the US for a consult with a lyme dr. Here in Canada Lyme is hardly ever diagnosed, it seems to be swept under the rug a lot. I know someone who was finally diagnosed with lyme here but it took 3 years and he was in a wheelchair because he was so weak and fatigued (along with other things)

i would like to add in here, i went to a lyme forum, from my understanding theres a whole population out there that believe in chronic lyme, dispite unable to show verifiable evidence, its almost like a cult. from my understanding these llmd that charges out of pocket, raises a red flag already, and they seem to agree and say what you want to hear as fact. They do have a few points that are correct, lyme is not easily treated when in the late stages. One other i noticed is that llmd chronic lyme believers use "chronic lyme", while other doctors use late stage-disseminated lyme disease, essentially means the same thing, but they say that to avoid probably legal issues.
-one of the tests that lyme doctors seem to use is IGENEX, they claim that it is accurate testing, but they were questioned by agencies, and only got the companies words "that our testing is sufficient within the laws of the state".
Heres the catch, even the lyme doctors and patients dont even believe that its accurate, they dismiss thier own test they promote, these igenex tests are very expensive, up to 200-1200 per test, the more expensive one is using co-infection panels. the lyme doctors claim they can diagnose lyme as symptoms and not by tests, there is something very wrong. so many diseases can mimic lyme, and lyme can also mimic diseases as well, so how can they tell the difference.
-Sometimes other doctors suspect lyme disease, but they will only do the tests that the cdc has put out.
- i contacted the igenex for cost of test, and was amazed by the expensiveness of the test. Igenex and some other labs will not be covered by insurance, so it can end up super expensive. Igenex and some other labs are rejected because of the reliability of thier test, and its not approved officially.
-the other big problem is that llmd and the patients are prescribed with antibiotic regiments that can last several months to more than a year, this is extremely hazardous, as long term use has side effects, and make yourselves vulnerable to antibiotic resistance, this is also promotes anti-biotic resistance as well. Many people actually get sicker while under this.
-also they proposed some wierd herb/supplement protocols which are also questionable.
When i question people about this, they become incredibly defensive, and start bashing me on the posts and calling me a liar(on other forums).
I think this is more like a conspiracy then a hoax, between the llmd and the lab test companies, because they know they can make money off of it.
llmd and lab tests that they order do not cover insurance. theres even laws protecting doctors/tests from being prosecuted or reprimanded for unethical conduct for being doctors.
When i first developed my undiagnosed cause of PN, i suspected lyme, but after few weeks of research i dont believe this is lyme, although i was in a tick area in the bay area, i took every pre-caution, wore chemical haz suits, gloves, deet sprays, "socks for the shoes". i was doing some conservation work.
You can go out of your insurance and pay out of pockets to see these doctors, but be warned do so at your own risk.
I also looked online about lyme doctors and thier patients, some of the lyme doctors caused deaths of patients with thier treatments, and some famous ones were even sued at one point.

[madisongrrl]

Originally Posted by Healthgirl

$1200 Ouch!
It was a 1.5 hour consult and he went over all my paper work.

Yeah that is pricey... but I assume a large chunk of that is lab work. How much did the consult part cost? It is nice to get someone with a different perspective to take a lot of time with your case.

Could you refresh my memory? Did you take the Igenex test in the past and have a borderline result?

Originally Posted by Healthgirl

He seems to be the only doctor who is curious as to why my ferritin is so low and why my copper is deficient.

Malabsorption due to autoimmunity? Have you found any good medical literature on the ferritin and copper levels? Clearly something is going on with that whether or not it's directly related to your SFN.

Originally Posted by Healthgirl

I must admit that I went in with the attitude of "of course this guy is going to say I have lyme with all my symptoms and go on about how flawed the CDC testing is", but yet I felt it was necessary to explore this option as no one has been able to help me.

I totally agree with you and will probably be headed down this same road shortly. All avenues need to be explored.

Originally Posted by Healthgirl

Lyme doc said plaquenil in conjunction with antibiotics can fight Bartonella...........I just hate medicine, but I don't know what I have to loose. I want my life back. I'm so freaking confused and have much to absorb as this was just last night that I got back from the appointment.
What do y'all think?

I think it's also difficult sorting out if your Sjogrens disease caused SFN or if it is happening in addition to it. I hate taking any kind of medicine too, but if I were in your shoes I'd give it a shot. At least for a little while to see if you can smack down some of this potential autoimmunity and/or infection.

[madisongrrl]

Originally Posted by Healthgirl

$1200 Ouch!
It was a 1.5 hour consult and he went over all my paper work.

Also, have you ever had a CD57 panel?