Here's my story- Need advice (sorry, it's long)

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Jaxy
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Date Joined Oct 2017
Total Posts : 12
   Posted 3/1/2018 12:49 PM (GMT -6)   
I live in Colorado and have my whole life. I have had 3 ticks on me in my life that I know of, 1 found in my hair when I was around 10 (not attached that I know of), another in my hair in my 20's (not attached that I know of), and then about 3-5 years ago I found a dead bird on my back porch covered in what I thought was mites, I got rid of the bird, but a few days later found a tiny poppy seed sized black bug in the crease of my leg. I picked it off and saw blood on my leg and my fingers. I really thought nothing of it other than it was gross.

Then about 3-4 years ago my husband got a bulls eye rash after a trip to Mexico. I work in the medical field and thought it was an infected spider bite. He got 10 days of Amox. After one of our trips to Mexico (not sure if it was the same one) I had an episode of headache, tongue and hand numbness and extreme panic. I went to the ER thinking I was having a stroke. They diagnosed tension headache and sent me home.

After that my symptoms began. It started slowly with increasing alcohol intolerance, then extreme knee pain for a year or 2, to the point that I could not walk down stairs un-assisted. Then food intolerance (gas and bloating, pain, constipation), headaches, sensation of something stuck in throat, severe panic and anxiety, forgetting words, extreme fatigue, inability to concentrate, no desire to clean, cook, work, live, loss of libido, noise sensitivity, irritability and more recently, the inner shaking while sleeping and trembling/twitching while awake, heart palpitations and chest pain. I have also had IBS since I was 16, extreme tailbone pain since my 20’s and tinnitus since my 20’s.

I have had a brain CT, abdomen ultrasound, tons of labs all the time and an upper endoscopy. I had Kaiser insurance and my Dr. always did what I asked because I knew something was wrong but she kept telling me it was anxiety.

The upper endoscopy was at the end of September and sent me over the edge. 2 days later I was in the ER thinking I had had a heart attack and that night I woke up shaking and hallucinating. I really felt like I had been drugged. I shook uncontrollably for hours, had diarrhea, felt like I had bees in my mouth and chest and could not sleep. My thoughts were out of control and made no sense. This went on for 4 nights. I lost 10 pounds in 15 days and in the 2nd or 3rd week got the neurotoxic build up. It was like I had post-partem depression and my son is 6. I lost all connection to everything, wanted to die and nothing seemed real.

At least there was still a part of my brain that recognized this and I reached out for help. I told my friend at work and my husband and my mother. My husband was out of town, so my mother had to come stay with me to help me with my son. At this point I had already found an LLMD but had no test results yet. I emailed her and she put me on Burbur and Pinella. In 2 days I felt more normal than I had in at least a year.

So, I got the DNA Connexions test and was positive for Lyme and Babesia Duncani. So far I have taken Iteres, Hepatica, Renelix, Samento, Burbur, Pinella, Doxy 3 times a day and Cefdinir 2 times a day for 30 days, parasite cleans, alchornea and teasel root. I am also on magnesium, lavender oil pills, Vit D and C, fish oil, activated charcoal and Cholestirymin. My problem is that it is aggressive and I started to get worse, plus the provider I am seeing muscle testes, which I don’t know if I believe in. I tested for multiple medications that have cinnamon in them and I am allergic, when I told my doctor I was told I tested fine for them. I have been allergic since childhood and get hives, and my grandmother is allergic too.

So, I went for a second opinion and was told to take the Igenix test and put back on Cefdinir indefinitely. Last night I got the message that my Ignenix test is completely negative for Lyme and I need to focus on my mold exposure. I have not seen the Igenix results yet, so I know nothing about if it shows any bands. I know I have some mold exposure BUT my symptoms, history, reaction to treatment are in line with Lyme and mold. I really liked this new LLMD and feel so much better on antibiotics but am now discouraged and confused.

Can’t the Igenix be false negative too and shouldn’t an LLMD know this. I don’t know who to stay with and don’t want to back slide again. Is there anyone from Colorado that has experience with Dr. N or Dr. K? Anyone else have any advice on what to do? It would be great if I didn’t have Lyme but look at my symptoms/history. I’m frustrated that the test results are being so relied upon by the one doctor but the other seems a bit aggressive for me and I don’t trust the muscle testing. Also I am worried my husband and son may have it.

Sorry this is so long, and I am sure I left stuff out! I have come to this board many times but never really posted. Any and all advice would be great!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33785
   Posted 3/1/2018 2:53 PM (GMT -6)   
Hi Jaxy - welcome!

I read quickly through your post....and will focus on a few points.

So you had exposure to ticks, including one that you picked off that had blood in it. You have developed symptoms consistent with Lyme Disease.

You tested positive lyme and babesia re: DNA Connexions test.

You were put on Cefdinir and Doxy and got worse (herx).

All that above = lyme disease.

You are correct - a LLMD should not take a negative lyme test and use that to rule out lyme....no, no, no.

Get a copy of your test results...you may have lyme specific bands. Although even if you don't...it shouldn't be used to negate lyme disease.

The only LL Dr.'s I have listed for Colorado are Dr. SN and Dr. DK.

maybe some forum members have a few more options. I suggest that you start a new thread: "Looking for LLMD in/near____" and fill in the blank - with city and state.

Then enable your email option through "My Profile" so members can send you names privately.

EDIT: I realized after I responded to your post that you had posted prior to this..and you're not really "new' to this forum...
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Jaxy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 3/1/2018 3:22 PM (GMT -6)   
Hi Girlie, thanks for your reply!

Yes, I am sure I have Lyme and was very shocked when I got the message response last night. Most LLMD's can treat or diagnose from symptoms alone.

I will get the results of the test.

Yes, I am seeing 2 PA's, one at Dr. SN's clinic and the other trained under Dr. DK, but she has recently opened her own practice and is listed as a "Doctor of Nursing Practice and Board Certified Family Nurse Practitioner".

I was told Dr. SN only sees very bad cases and Dr. DK was booked out 6 months at least. I am fully functioning and still work 4 days a week, drive, take care of my son, etc... so am not considered "a complicated case".

I did herx here and there on all treatments started, I had a few weeks of increases anxiety, insomnia, buzzing sensations, air hunger and dizziness, but after a month or so I basically just started to improve, especially on the antibiotics.

I did not start to get worse until I stopped antibiotics and was only on homeopathic treatment. Then the shaking during sleep and the general weird unwell felling started to creep back in and I panicked. That is when I went for a second opinion, now I think that was a waste and just caused confusion.

I don't think I need more LLMD's, I was just wondering if by any chance there is someone here from Colorado that has experience with either. I will still put up another post and activate my email.

Also, I wanted advice on the Igenix test being negative. That was totally unexpected. I was sure it would be flooded with proof of Lyme. I thought it was the better test. So frustrating!

Thanks again!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33785
   Posted 3/1/2018 4:31 PM (GMT -6)   
okay - I misunderstood...thought you were not happy with your current practitioner(s)

Will you post your Igenex test results when you get it? We can help you determine which ones are the lyme specific bands...and do indeed 'count' when you're being diagnosed.

The Igenex WB (all western blots, actually) rely on your immune system to mount a response to the bacteria - and produce antibodies. Often, with lyme, our immune system is suppressed and we don't produce those antibodies...resulting in a negative test.

You are correct - It is one of the better tests - as Igenex specializes in tick borne disease testing.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33785
   Posted 3/1/2018 4:33 PM (GMT -6)   
You could also start a new thread: "Experience with Colorado LLMD's..anyone?"

And in the first post - put the initials of both of them.

You may end up with some other options.

EDIT: - I see you already have started a thread....so ignore this.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Jaxy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 3/1/2018 4:55 PM (GMT -6)   
I just got this response from the provider about the Igenix results;

"Actually the urine test you did at ______ clinic is known for false positives.
I think you may be feeling better on antibiotics because it may be reducing some type of stress on your body, but remember you also are doing a lot of detox. Herx can happen with treatment of many pathogens not just Lyme and it only happens within the first few hours to first 10 days. Its easier to translate that with a history in person. I think your problem is mold. The symptoms are very similar and the neuro symptoms specifically.
I can fax you the results. You only had only an indeterminate result on band 41 which is cross reactivity to viruses and not borellia specific.
Before we go down the road of testing for Bartonella and Babesia ( it's possible to have those without Lyme but not very common) but Cefdinir doesn't even treat those. I would suggest continuing down the mold mitigation and binding path. Would you like me to fax the results to you?
Mycotoxins (mold) is far more treatable than Lyme. Did you ever get the Ozone machine as I had suggested before to help while repairs are being done ( or before)? I would put the money from the cefdinir towards that.
If you'd like to discuss further we can do a follow up appointment."

Guess I will be going back to the other clinic. Even the ILADS website says Lyme is a clinical diagnosis!
I will post the results once I get them.

Jaxy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 3/1/2018 5:08 PM (GMT -6)   
She just sent this response too;

"Sorry,
Also to answer the "killed off question". No, if you had been exposed at all it would show up in the IGG result. The antibodies don't just disappear. There are some people who's immune response is so weakened that the test result may lead to a false positive, with only a few bands present. Those people are usually quite ill and bedridden, unable to work or function. Your results were negative by Igenex criteria ( which is much wider) and CDC.
If you go to ILADS website it may help. But you are negative for Lyme."

I had asked if it could be negative because I was treating and killing off bacteria. I'm so frustrated, I know this is Lyme and she is telling me it isn't and it's making me question myself and the diagnosis.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33785
   Posted 3/1/2018 5:19 PM (GMT -6)   
"There are some people who's immune response is so weakened that the test result may lead to a false positive, with only a few bands present."

Oh boy - does she have that backwards. If the immune response is weakened...then how is it able to mount a response?

No false positives.

And she is wrong about the IgG. I was diagnosed with lyme in 2014 after 14 months of symptoms.
I had IgM antibodies show up and only one IgG - band 41.

IgM doesn't seroconvert to IgG like most diseases do. It can stay as IgM for months/years.

I'm not surprised that she doesn't accept the DNA Connexions test though. I know some LLMD"s don't.

What is she meaning about the ILADS website? What will it say there that will help you?


"Herx can happen with treatment of many pathogens not just Lyme and it only happens within the first few hours to first 10 days."
No, people have repeated herxes...because the bacteria isn't all killed off in the first 10 days. Changing medications also can cause a herx.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 3/1/2018 3:22:04 PM (GMT-7)


Jaxy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 3/1/2018 5:23 PM (GMT -6)   
I don't know but I went to the website to see if I could see anything about test results and all I found was it says Lyme is a clinical diagnosis.

I am interested to see the results.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 3/1/2018 7:25 PM (GMT -6)   
Does anyone know WHY some doctors don't accept the DNA Connexions test?

What basis does the doctor have for saying that DNA Connexions is "known for false positives"? That is a PCR analysis that looks for bacterial DNA. How can you have a false positive on a DNA test?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33785
   Posted 3/1/2018 7:31 PM (GMT -6)   
WalkingbyFaith said...
Does anyone know WHY some doctors don't accept the DNA Connexions test?

What basis does the doctor have for saying that DNA Connexions is "known for false positives"? That is a PCR analysis that looks for bacterial DNA. How can you have a false positive on a DNA test?


I know one Dr (maybe more?) don’t because the Company has not done validation studies.

Another Dr (or maybe the same one) said the results that he’s seen don’t always “match up” with what he sees in his patients - or something like that.

I wish they would just do the validation studies if that’s what is required to be a valid testing facility.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 3/1/2018 7:31 PM (GMT -6)   
For what it's worth, I agree with you and disagree with that doctor.

Do take care of the mold, but do not ignore the Lyme and coinfections.

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1301
   Posted 3/1/2018 7:34 PM (GMT -6)   
Sounds a lot like parasites to me.
Especially when you say trips to mexico. You can take test but they are worthless. You can find someone who muscle test and that can be very helpful. You can also just take two weeks of albendazole and two weeks of ivermectin and see if you have any reaction

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 3/1/2018 7:47 PM (GMT -6)   
Girlie said...
WalkingbyFaith said...
Does anyone know WHY some doctors don't accept the DNA Connexions test?

What basis does the doctor have for saying that DNA Connexions is "known for false positives"? That is a PCR analysis that looks for bacterial DNA. How can you have a false positive on a DNA test?


I know one Dr (maybe more?) don’t because the Company has not done validation studies.

Another Dr (or maybe the same one) said the results that he’s seen don’t always “match up” with what he sees in his patients - or something like that.

I wish they would just do the validation studies if that’s what is required to be a valid testing facility.


Girlie,

I know about them wanting validation studies, but the absence of a validation study is not proof that their tests are "known to produce false positives." That's slanderous to the lab if it isn't true and confusing to patients and uneducated providers alike if they just believe unsubstantiated information they hear.

The doctor who said that labs results don't "match up" to what he sees in patients needs to think a little deeper. Really sick patients with blatent symptoms of late, disseminated Lyme who are seronegative doesn't "match up" either.

Like some of you, I suspect many asymptomatic people have these bacteria in their bodies and would likely have a positive result with DNA Connexions if tested. That, in no way, would be a false positive. It would simply verify what we already believe, that there is more involved in symptomatic Lyme disease than just borrelia bacteria and that everyone who comes in contact with the bacteria doesn't develop symptoms from it.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33785
   Posted 3/1/2018 8:47 PM (GMT -6)   
WalkingbyFaith said...
Girlie said...
WalkingbyFaith said...
Does anyone know WHY some doctors don't accept the DNA Connexions test?

What basis does the doctor have for saying that DNA Connexions is "known for false positives"? That is a PCR analysis that looks for bacterial DNA. How can you have a false positive on a DNA test?


I know one Dr (maybe more?) don’t because the Company has not done validation studies.

Another Dr (or maybe the same one) said the results that he’s seen don’t always “match up” with what he sees in his patients - or something like that.

I wish they would just do the validation studies if that’s what is required to be a valid testing facility.


Girlie,

I know about them wanting validation studies, but the absence of a validation study is not proof that their tests are "known to produce false positives." That's slanderous to the lab if it isn't true and confusing to patients and uneducated providers alike if they just believe unsubstantiated information they hear.

The doctor who said that labs results don't "match up" to what he sees in patients needs to think a little deeper. Really sick patients with blatent symptoms of late, disseminated Lyme who are seronegative doesn't "match up" either.

Like some of you, I suspect many asymptomatic people have these bacteria in their bodies and would likely have a positive result with DNA Connexions if tested. That, in no way, would be a false positive. It would simply verify what we already believe, that there is more involved in symptomatic Lyme disease than just borrelia bacteria and that everyone who comes in contact with the bacteria doesn't develop symptoms from it.


Just to be clear - I only stated what I had read/heard - didn’t say it was my opinion.
I have considered doing the DNA test.

Although if reputable labs do Validation studies - (I don’t know what they consist of) then this lab should do them. I don’t know what is involved. Maybe these validation studies are checking that their procedures/methods are producing valid results. IDK

I agree with you on the LLMD saying that the results don’t match up with what he sees in his patients....we have asymptomatic infections, symptom overlap..etc
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Jaxy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 3/1/2018 10:04 PM (GMT -6)   
I agree that I need to address the mold issue and I believe that I have parasites and muscle tested for parasites as well.

I did some of the parasite treatment but it made my tinnitus so much worse. Unfortunately, if I can't sleep I can't function and I won't risk that, so I have backed off and pulse it every few days. In the begining I think I saw worms and eggs, not sure though, and nothing since.

BUT is still think I have Lyme Disease also, she replied again and told me "sorry I was misled" and "I should stop reading about Lyme Disease on the internet"

She also tells me why other people are wrong in almost every response she sends me, which makes me wonder about her. I think she probably has some good advice about treatment but now she won't address the Lyme any farther.

I called the other clinic and was given an appointment with the doctor, not the PA, but not until April 24th.

I still don't have the results but she said out of the 9 bands needed, none of them were positive, but what does that matter if the other test was positive?

I wish they could at least figure out how to test accurately. It's so discouraging.
cry

Jaxy
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 3/2/2018 2:16 PM (GMT -6)   
I received the test results.

Line 41 ++
Line 58 +

Everything else is negative. I do not know how to post the image.
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