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» LymeNet Flash » Questions and Discussion » Medical Questions » Some unsettling results - and it's my turn to ask - am I being taken for a ride?

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Author Topic: Some unsettling results - and it's my turn to ask - am I being taken for a ride?
woodstock
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OK, my last visit my doc pulled a lot of tests, both from stool and from my blood.

Here is what is showing up, and below is how she wants to treat it. Keep in mind that I mostly feel pretty good, biggest complaint is insomnia. Now I do feel a little anxious though after all this!

Anti-TPO Ab is 228 which is high, should be under 35
Toxoplasma Ab (IGG) is high, 115.7 and should be under 6.4
Toxoplasma Ab (IGM) is negative
Tularemia is right on the border. It should be under a number, it's bang on that number.

Q Fever IGG Phase I and Phase II are positive.
Bartonella is bang on the number, whereas negative would be "under it". I guess that means low load/on the border.

IGG Band 30 and 45 are positive
WAI IGG AB IFA is 1:256 - bang on the number, should be just under.

Ammonia is 92, should be 11-51
Carnitine is lower than it should be (slightly)
Prothrombin Fragment 1.2 is high. Thrombin/Anti-thrombin complex is high.

D-Dimer is a little high
Actinomyces is positive
Proteus Mirabilis is positive

Actinomyces tunicensis is positive
Prevotella Species Group I and II is positive
Anaplasma phagocytrophilum is positive

Of the above, how much of this is stuff we all carry around? How much is abnormal and how much is just part of being human and if you have a good immune system which I do, how worried should I be?

The CT scan, which was the big thing she was touting (she thinks I have SIBO and ileocecal issues) was normal. Lungs, kidney, etc etc all normal.

She didn't even bring it up, I had to ask, and when I did ask, she said "Oh I never got the results" and I said "you are kidding, it's been two weeks" and she said "you'd be surprised, sometimes I never get the results - 30% of the time".

I thought to myself "what a crock of BS. You order expensive results and never get them back? Do you ask for them? Do you track them down?"

Now, treatment, which is where I am thinking this is BS:

She said we can do nothing and watch which she doesn't recommend.
She said we can treat with herbs and homeopathy first which she does recommend. She sells them.
She doesn't recommend just doing antibiotics or other RX meds.

She was really, really pushing something called Zyto. She kept coming back to it. It was clear homeopathy is what she really wants to do, along with herbs.

She said after a few months on herbs and homeopathy we can see "if the load has come down" and then start antibiotics.

All that said, she did RX Rifaximin (Xifaxan) and Yodoxin. On top of the long list of herbs and homeopathy. So are the herbs and homeopathy even adding anything to this?

So I ask you - what would you do? I will tell you my plans but I want to first ask if the above is worrisome (the diagnosis) and what you would do about her preferred treatment. (I do have clear cut plans, don't worry).

I will come back later and list the herbs. I gotta run...

thank you for any thoughts.

[ 04-11-2014, 12:34 AM: Message edited by: Robin123 ]

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woodstock
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ps. she still believes I have SIBO. We have only done stool tests.
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woodstock
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ps. She said she never got the CT scan, but I pressed the issue, so she went to talk to her team and they said it was in her email so she looked and found it. Hmmmm... she replies to my emails within a few days, I can't believe she didn't see it?
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Lymetoo
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Doesn't have a good sound to it. I think if you feel well you should watch and wait. After what abx has done to my gut, I am just not gung-ho on treating with them anymore.

Sounds like she wants to do Zyto so you have to come back even more often.

I began going downhill when my GI dr prescribed Xifaxin for what he THOUGHT was SIBO. NO TEST.

Took it for two weeks and it activated yeast and possibly some other problems for me. I have not been a happy camper since then.

Before treating SIBO I would want the breath test... at the very least.

--------------------
--Lymetutu--
Opinions, not medical advice!

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hiker53
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If you decide to go with her herbs and homeopathy treatments, see if you can find them cheaper elsewhere and let her know if you do find them cheaper.

Be interesting to see if she then changes her mind.

Hiker53

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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Judie
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I don't know all those tests, but this one stood out to me:

"Prothrombin Fragment 1.2 is high. Thrombin/Anti-thrombin complex is high."

It sounds like there may be some hypercoagulation issues. You can take various supplements like boluoke for that.

Another question is are you having intestinal problems (not from a test, but symptomatically).

I saw a practitioner who did herbs and homeopathy awhile back. She ran an OATS test and said I had something like C Diff. Keep in mind I had NO symptoms of gut problems. She wanted me to take all these herbs and homeopathy.

I spoke to 2 other MDs and an ND. All agreed that you treat the patient, not the test. The tests aren't totally accurate when it comes to the bowels and if you aren't having IBS-like symptoms, don't treat.

What I also did was contact the lab DIRECTLY about other test results. She was telling me I had sensitivities to certain things and wanted to sell me all kinds of stuff. I looked at the test and something seemed off.

It turns out the practitioner misrepresenting test results to sell me more supplements and do her protocol.

I don't agree with your doc. I've gone down the homeopathy/herb route before and I just got worse. That's me though, some people do great on this.

I'd get a second opinion if the treatment plan doesn't sit right with you.

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Sammi
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quote:
Originally posted by woodstock:
Anti-TPO Ab is 228 which is high, should be under 35
[/QB]

This can indicate Hashimoto's Thyroiditis. Is your doctor going to treat you?
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poppy
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I was wondering about toxoplasma results. If it behaves the way textbooks say, the negative IgM means it is not active, and IgG result means you have been exposed to it. A large percentage of the public carries toxoplasma around without any symptoms. So, that would suggest maybe it didn't need treatment.

As to treating other things with homeopathy and herbs, that is a personal decision. I have never seen a good scientific rationale for homeopathy. Herbs are a different story, IMO, because some do have medicinal properties. Whether there are ones that help what you have is the thing to know.

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Lymetoo
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quote:
Originally posted by Judie:

I spoke to 2 other MDs and an ND. All agreed that you treat the patient, not the test. The tests aren't totally accurate when it comes to the bowels and if you aren't having IBS-like symptoms, don't treat.


-
Agree.. and yes to what Sammi and Carol said. Treating the hypercoagulation could make you feel better all over. And definitely up the magnesium.

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Opinions, not medical advice!

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nefferdun
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Sounds like $$$$$ to me.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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woodstock
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Hi all

History with doc: Ten years ago, she treated me for 20 months after babs diagnosis and really helped me. She took insurance and although she was aggressive it was all covered.

I continued to see her on a quarterly only basis after that time (8 years now). She took insurance but at some point she stopped. I couldn't tell you how many years ago she stopped.

I mostly just saw her to get my Armour Thyroid refilled (90 day supply) and Singulair (same thing). Last summer I mentioned neck pain which her nurse DX'd as babs coming back. Since June I've been monthly (with a few 2x).

The babs load was very lot and I would characterize my issues as twinges, and insomnia. She still hasn't cured the insomnia.

Her fees jumped DRASTICALLY last summer after she moved into a huge new space. It was previous around 175-250 for a visit once she stopped taking insurance.

Last summer I was shocked to have it jump to 300-325-375 for a visit - one visit was 400 - that was late summer, with her.

About 5-ish yrs ago this doctor RX'd me with SIBO based on a stool culture. I ignored the protocol after the first month or two (CNBS protocol if I recall - samento, cumanda, burbur and something else) and I'm still here.

She not only doesn't know I dropped the protocol, this was during my quarterly only visits and I don't recall follow ups on that specific issue at the time.

The whole appt today was weird. She really doesn't like to be questioned. She is dismissive, or tells you that she just spent 30 minutes explaining why I wasn't showing symptoms.

Personally I think it's one of the most valid questions out there - why am I not showing symptoms?

Or, the symptoms I do show are like a horoscope - it could mean many things. She was convinced I had ileocecal issues, caused by SIBO, two weeks ago at my last appt...

and when the results didn't match up she tried to "leave it for the next visit" by telling me she didn't have the results.

I had to press for it and I think she probably figured out my next step was going to be calling the hospital so she "oops, found the results" and went over them.

Sure, leave it for the next visit but really impress upon me how important it is to treat this, and really push the Zyto machine (google it, just google it) several times. I kept coming back to "well, I don't have to do the zyto" and she kept coming back to it.

Then she quoted the price to me and I told her I probably wouldn't do it (the test itself is 300-1200 bucks and not covered by insurance).

She then quickly said "we can just do targeted tests". My thought there is - how do you know what to target if you don't do it all?? Sigh.

So, I had a Normal CT scan. Hmmm, no ileocecal issues. Does that mean no SIBO? Or is it lurking?

So, the treatment:

Probiotics (which I can understand, fine).
• 2 saccharomyces
• 1 theralac
• 2 vsl #3

Homeopathy (potentiated means hitting it with a laser gun meant to isolate the certain band that she wants to treat. Laser gun).

• EGA potentiated for babesia and protozoa
• Lyphtone I potentiated for Candida
• IBD Chord potentiated for SIBO and ADD/ADHD

• Lipo Chord potentiated for EBV
• Allerchord I potentiated for Phenolic and 5NT (?)

Herbal liquid tinctures
• Dandi blend 15 drops
• Scrofulara 15 drops
• Burberine 15 drops Goldenseal 8 drops

• Pau d'arco 15 drops
• Cat's Claw
• Olive leaf extract

RX meds:
• Rifaximin (Xifaxan)
• Yodoxin

So out of the above, which would you take? I am kind of on the fence about the herbals. Willing to give them a shot.

Re: the Q about the thyroid. She didn't even bring up the thyroid. At all. Didn't even mention it.

And I have those numbers even though I am on 150mg of Armour Thyroid. Would that make it worse or better?

She also didn't say much about the thrombin numbers.

Re: gut issues. My stools are normal. Not diarrhea, not constipated. The CT scan showed no thickening.

Judie, did you figure out why you got worse? Was it that the herbs made it worse, or, that the herbs simply weren't treating the issue and thus it went untreated?

[ 04-11-2014, 12:37 AM: Message edited by: Robin123 ]

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beaches
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I'm no expert but if your biggest complaint is insomnia, I'd try things that would help that, like melatonin.
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woodstock
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babs very LOW not lot (in latest post).

beaches, I'm taking magnesium and cortisol control as well as occasional melatonin...

sigh.

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woodstock
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Would baby aspirin treat the coagulation?

What about Fibrozym?

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beaches
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You say you feel pretty good but for the insomnia. I'd say that's a victory.
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woodstock
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I feel the same way, beaches. So why is this doctor trying to convince me she rarely ever sees this kind of parasite and bacteria load? And that I need to do her recommended protocol? Which happens to be things she sells or does there?

She was even trying to talk to me about IV treatments... in her office.

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beaches
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I can't answer that. All I can say is that if you are feeling well and insomnia is your only issue, you should just pursue treatment for that.

And consider yourself blessed.

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woodstock
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I do.
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Thewino
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Hey Woodstock,

That is a high ammonia level. If you are a believer in the methylation cycle, if you have one of the MTHFR gene mutations which would inhibit detoxification.

It is mentioned here: http://www.dramyyasko.com/resources/autism-pathways-to-recovery/chapter-6/.

Here is the first time it is brought up:

"CBS mutations: Unless these are addressed first, adding in other methylation cycle supports can lead to increased levels of ammonia, highly elevated taurine, hydrogen sulfide, and other toxic sulfur byproducts. We address these via the Ammonia Program (see below.)

Address the rest of the methylation cycle imbalances by supporting both the “long way” around the cycle via the MTR/MTRR as well as the “shortcut” through the cycle via the BHMT enzyme.

Prior to beginning Step Two, you may also wish to run an initial, baseline urine amino acid (UAA) a MAP (or OAT) and CSA tests. When looking at these tests in conjunction with the Nutrigenomic test you can refine the supplement choices for you or your child."

If you want to read more, check out: http://mthfr.net.

Be well,
TheWino

--------------------
Wrinkles only go where the smiles have been --J. Buffett

All of my replies should not be taken as medical advice as they are my opinions only and I am not a physician.

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GretaM
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Did you ever take abx targeting anaplasma, tularemia and bart?

Bart often IBS and insomnia symptoms.

Would want abx for tularemia-not homeopathy.

If you feel good, do you "poke the bear" or leave things be?

Hard to say. Personal decision.

Tularemia should be treated, IMO.

Homeopathy didn't work for me before lyme dx, but positive lyme.

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beaches
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Good points made by thewino and gretam.

But this person is reporting that he/she is WELL and reporting that his/her main sx is insomnia.

I look forward to the day when insomnia will be my kids' biggest problem.

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Robin123
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Hi Woodstock - hope you get good evals from folks here. I broke up your posts into a couple lines at a time to make it easier to read for many people here.
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Judie
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"Judie, did you figure out why you got worse? Was it that the herbs made it worse, or, that the herbs simply weren't treating the issue and thus it went untreated?"

This is what happened. I started seeing this practitioner after my first bout with Lyme (I had paid out of pocket for an LLMD before this, this new person was an acupuncturist who worked under another Lyme doctor who took my insurance).

I thought I'd save money seeing someone who took my insurance (boy, was I wrong).

I had first seen her with the intention to get herbs to keep the Lyme in check, but she didn't believe I had Lyme anymore.

She first told me we were going to "clean up my terrain" since I was recovering from Lyme treatment.

I was all into recovering, so I did her protocol for 8 months. I did not feel much better after it.

THEN, I got reinfected with Lyme. I had the bulls-eye rash and everything.

The acupuncturist I was seeing could prescribe antibiotics because she was also a PA, however she REFUSED. She was under the belief that if you have a bulls-eye rash, you might not have Lyme.

Her protocol was to treat with herbs, homeopathy, and to wave a box around me to "balance my energy" and "enhance my immune system."

She tried to scare me into not taking antibiotics saying I was too fragile. She then said if I don't improve in 7-8 months, we'll consider antibiotics.

After a month of these shenanigans, my health went off the deep end (I could barely walk, no energy, severe cognitive dysfunction and waaaaaaaay worse than the first time around with Lyme). I spent 1-2k over a 1 month period of time.

Then she started to say I needed to visualize healing angels to get better (or I wouldn't heal) and needed to see her more often.

At that point, I couldn't even drive to her office anymore I was so sick.

I called the lab to discuss some of the more dubious diagnoses that she gave me and found out a lot of it was bogus.

I just did my taxes. I had so many itemized deductions for medical from seeing this lady that I got a refund.

I went back to the LLMD I originally saw for Lyme (and am saving money relatively speaking). The antibiotics are saving my life as far as I'm concerned.

I haven't done ANYTHING for the C. Diff problem the acupuncturist claimed I had and my stomach has been fine. I'm on 3 antibiotics now and just need to take probiotics to keep it in check.

She was TOTALLY wrong about the stomach diagnosis.

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Pam08
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Judie...I just want to say that C Diff can be very serious and even deadly so it is nothing to mess around with. So I wouldn't really blame a doctor for wanting to treat that if you indeed actually had it.

Woodstock...based on your test results you do seem to have a number of infections/issues going on. Since you feel mostly well that is a tricky situation. Is your immune system keeping those infections in check or are they slowly starting to become a bigger problem? Unfortunately that is a tough question to answer.

Even if you choose not to treat the infections I would definitely look into some of those other issues.

As someone else mentioned the Anti-TPO can indicate Hashimoto's Thyroiditis which is an autoimmune disease that attacks the thyroid. That could be the reason why you have thyroid problems already...although I am not a doctor so you should definitely talk to a doctor about that.

If it were me I would look into what all of those test results could mean and then discuss those with a doctor.

Oh and to answer your question...yes the fibrozym (or another systemic enzyme formula) could be helpful for hypercoagulation. Systemic enzymes did help me with that issue (which was proven by my blood work results). Again though...I am not a doctor so all I can do is tell you what worked for me.

The last thing that I want to say is that based on this thread as well as previous things that you have said it is very clear that you do not trust this doctor and are not comfortable with her or her treatments.

In my opinion if you don't trust your doctor than it is time to find a new doctor that you do trust and that you can have a good doctor/patient partnership with. To me trust is critical and if you don't have it then things likely won't go well between you and your doctor. Your health is important so you need to do what feels right to you and you need to be able to trust the doctor that is treating you since your health is in their hands.

If you feel like you are well enough and you don't want to be treated for any of those infections (by any doctor) then you could just take your test results to your primary care physician in order to address the other abnormal test results ie thyroid, ammonia, hypercoagulation etc.

--------------------
Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.

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Judie
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" C Diff can be very serious and even deadly so it is nothing to mess around with. So I wouldn't really blame a doctor for wanting to treat that if you indeed actually had it. "

I agree, but I didn't have it. I spoke to 2 other MDs about it and an ND. All said to treat the patient, not the tests.

She was diagnosing me via an inaccurate test. Also, I had no symptoms. The test was last July and my gut has been just fine.

She was using it as an excuse to sell me more products.

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Robin123
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I remember the one time I got C diff, from a regimen of erythromycin, I was put on IV at a hospital and given fluids - no idea what, which completely stopped the problem.
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woodstock
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In other news: Last Singulair taken was Saturday morning. Last night I slept straight through the night. I do feel a little snuffly in the nose this morning. Not sick, not bad, just snuffly.

Doc did say, though, that Singulair could be helping my immune response overall. I did not tell her I had stopped (for now, temporarily, to see if it helps my sleep).

Greta, this is the first time I've heard that I have these things. Esp bart, I would remember that. The other stuff I'd have to look through old tests. She is thorough, but she doesn't always test to this level. So, no, no abx meant to target those. The latest abx was Cefnedir (Omnicef) for three months.

What can happen with tularemia? I am "on the numbers" meaning the lowest that shows I have it - had I been just under it would be "normal". It's not "high".

The "trust" thing, hits it on the head. While you are talking to her, she sounds so completely sure of all of this, and has an explanation for everything, that you think "well, this sounds plausible". And of course those results!

So, I would say I can believe the results and what can happen.

Where I am highly suspicious is the stuff she is pushing. She was really pushing the Zyto machine. Seriously, google it. And good "zyto scam" as well.

This whole idea of "zapping with a laser gun" these liquids and that they are going to kill the bugs seems so out there to me. She didn't use to do this. 10 years ago she was very aggressive with the abx and the mepron and the liver testing - she really kept up with my liver. This time, she barely mentioned the ammonia. She said it was high, but she didn't talk about diet or anything other than really pushing the homeopathy.

And when she mentioned IVs I just thought, this is really weird. I am NOT SHOWING SYMPTOMS. She said the IVs do not give a flare at all. Well, is the reason they do not because they aren't actually doing anything - other than lightening your wallet?

I think my big issue is that now, I really feel like a profit center. All this stuf comes from her, and it's very spendy and not covered.

And frankly, she gets very haughty and dismissive. She didn't like to be questioned, she got annoyed. And she kept pushing the zyto and I kept saying "it's an option, I don't have to do it, we can look at all options" and she kept repeating it. It was like ping pong - we went back and forth on that topic 3-4 times before dropping it and moving on.

So, on the one hand I have results that so far, I believe her when she says this is what is wrong. I am not convinced another doctor would have looked for this. So that is good.

Where I really diverge is how to treat it, and whether I want her to treat me even if she weren't doing this whackadoodle stuff. Her attitude is getting tiresome. I'm paying far too much money to get this attitude.

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poppy
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Sounds to me like it is time to move on.
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surprise
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Agree with Poppy. Reading objectively, it's clear you want to/ signs are pointing not a good match.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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Lymetoo
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Couldn't the Armour Thyroid be causing the insomnia? Did you sleep well last night?

Might want to have your PCP follow up on the possible Hashimoto's.

--------------------
--Lymetutu--
Opinions, not medical advice!

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surprise
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P.S.
I don't think you are being taken for a ride.
Different styles and methods, is all.

My first LLMD worked with an incredibly talented Zyto person,
but we followed up with blood tests.

The Zyto read out gives a 'level' of what issues the body is struggling with in order.
Quite interesting mine came out with parasites as #1.

Back at that time, the LLMD even asked me:
Have you done traveling? (No)
But it started my parasite treatment journey, which has been astonishing to say the least.

We did end up eventually changing LLMD's for a few reasons, and it was scary. But at that time I was looking for more Burascano treatment, and was able to obtain that with the switch.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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Pam08
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Woodstock you mentioned that she didn't prescribe any abx to target the infections but I believe the Rifaximin and the Yodoxin that you said she prescribed would actually cover some of the infections that you mentioned.

From what it looks like the Rifaximin is similar to Rifampin which is an antibiotic that is used to treat Bartonella as well as Anaplasma among other things.

And the Yodoxin is an antiprotozal med which she may be using to treat Babesia as well as the possible toxoplasma.

With those antibiotics and the herbs etc she prescribed I do think that she is trying to target the infections that showed up on your test results.

Also I just want to throw out there that I have heard of people having good results with the Zyto as well as with similar devices such as the Asyra. Some people have even verified the results with blood work afterwards.

If you do a search here for both of those devices you will see some info on that. It sounds like with those types of devices it can really depend on the practitioner using them as to if they are helpful or not. I do realize though that for some people it seems a bit too far out there.

I agree with Surprise in that I think you and your doctor don't seem to be a good match as far as the type of treatment you want and the type of treatments she is prescribing.

I know it is a big decision and can be overwhelming to find a new LLMD but it seems like you would be a better match with another doctor. This has obviously been weighing on you for some time now so I think if you found someone that used more mainstream treatments it would definitely take a big weight off of your shoulders.

--------------------
Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.

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woodstock
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Everyone, thanks for sticking with me this far.

I am seeing my GP next week and asking for a referral to an infectious disease specialist who takes insurance. I want him/her to see all the results and hear their thoughts on treatment (or not - like someone said above, why poke the bear?).

I appreciate all the digging she did, but I don't feel comfortable with the diagnosis or treatment. I felt she was using a lot of scare tactics.

If half of those were from a tick bite, then I assure you, that tick bite was 25 years ago because I DO NOT go in the woods, or camp, or hike in grass, or even walk in grass.

I am semi-urban and don't get out in the wild - I don't even mow my own grass. It sure seems to me my immune system is doing a good job.

Pam, I didn't see she didn't want to use ANY abx, I said she didn't want to use ONLY abx. However, what made it all so confusing is that initially she wanted me to use only herb/homeopathics for a month or two to get the load down first.

She talked up how tough abx could be on my system right now with all that going on. Then at the very end she wrote the RXs for it all anyway. So what is it - too tough on my system, or what?

I'm going to guess the most "good" will come from the abx/anti parasites listed. And when things look better in a month or two she'll say "see, the herbs and homeopaths work". Sigh.

I also think that we are moving past Lyme which should make finding a doc who takes insurance will be easier.

Carol, I really hope you wouldn't be impressed that a doctor (to whom I gave almost 400 dollars for a CONSULT only) looked up the results for the test she said were urgently needed!

I spent the whole two weeks on pins and needles about this test - taking that test was why she insisted I make an appt two weeks later instead of 4 weeks later as I usually did - you bet your bippy she should have had those results.

If, in fact, she didn't even bother to look for them to make sure they were there before I came in, and she still planned to charge me that kind of money, it borders on unethical. And if she DID see them, but tried to bury them because they didn't match the results she wanted to pitch, then that IS unethical.

I will say that the first half of the appt, when she was explaining the results, I believed what she was saying. But as soon as we got to treatment it really, really seemed to me that this was a sales pitch.

The scare tactics, the persistent pushing of the zyto - not explaining the science behind it, but just pushing it... and some of her explanations just didn't ring true.

I am very, very, very good at spotting inconsistencies in arguments. You could say it's my job. And this just did not ring true.

I could elaborate more, but I guess you had to be there. My questions (which were not jerky - it was the kind of questions any alert, well informed person should be asking - and that a doctor should encourage) were met with impatience.

She wanted me to treat with homeopathies and she wanted me to do zyto. Although I mentioned four times I wasn't interested, she still wrote on my chart that I was supposed to budget for it.

And now I'm off to bed. Last night I slept 7 hours straight through, let's see what tonight brings...

Thank you again everyone.

................................................

Breaking up your post for easier reading for many here -

[ 04-12-2014, 01:47 AM: Message edited by: Robin123 ]

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poppy
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You were unhappy with that experience, but I don't think this is something to share with an ID doc. They are looking for reasons to shaft lyme docs, so don't give them any ammunition.

I have so lost faith in IDs, that I would never go to one, and have doubts about you going to one. Just don't get your hopes up.

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marypart
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I agree with Poppy on not sharing this info with an ID doc. The last thing that is needed is any more trouble for Lyme docs.

Also, you did say that she did a good job years ago.

I'm wondering... maybe you don't need to treat at all... just wait and see. Maybe your immune system is just holding things at bay. I think we all harbor infections, but if the immune system is handling it, why bother to treat?

--------------------
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.

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woodstock
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I just had a thought:

Does Coartem hit all/any/many of the parasites I listed above?

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nefferdun
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Don't go to an infectious disease doctor!!! Boy is that ever a mistake. I was told I never had Bb even though I tested positive twice. I won't go into all of it, just believe me. If you believe your insomnia might be caused from an infection go to an LLMD.

You are doubting what your gut is telling you about this doctor. Don't. You need to see someone else.

Bart is at the top of the list for causing insomnia. Do you have any unusual skin marks like pea size brown spots, loss of pigment, crust moles, skin tags, streaks that look like stretch marks, nodules under your outer thighs that hurt when located and pressed, broken veins, swelling that does not leave a dent when pressed, pin head size blood blisters, milia (little white things under the skin). . . . . . Are you anxious or irritable?

Coartem is for babesia/malaria. Do you have profound fatigue, difficulty focusing and remembering, pain/cramps in large muscles, air hunger, hot flashes, headaches behind the eyes . . . . ?
I have heard some people get insomnia with babesia but when it was my dominate infections I would fall asleep even when I didn't want to.

You said except for insomnia you felt ok? If you have Hashimoto's, then you could be having a thyroid flare - thyroiditis. If you have Hashimoto's taking Low Dose Naltrexone will calm down the auto immune problem and help but you have to be very careful to lower your thyroid hormones if necessary.

I so feel for you. Having insomnia is the pits. If it is caused from a medication or bartonella or thyroiditis, it takes a pretty powerful sedative to knock you out and then you have to deal with THOSE side effects.

Protomyxzoa Rheumatica can also cause insomnia but is causes extreme fatigue and a lot of other things you haven't mentioned. A couple of symptoms more specific to it are nasal congestion (feel like you have an allergy), loss of voice now and then, and pain in teeth or jaw.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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woodstock
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Hi

Well, little by little, the insomnia is getting better. I sleep a full 8 hours about half the time now (usually broken up - 4 hours, wake up for a little bit, 4 hours). This was before stopping singulair.

I stopped the singulair one week ago see what it would do. Three nights in a row I have slept 7 hours straight. Last night, and the two nights before it.

Why is seeing an ID wrong? Isn't that their job?

I have none of those symptoms. I did get some air hunger when I was taking coartem, though. Once I quit it went away.

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woodstock
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I just looked through a few tests I had handy. Drawn in mid-November. Q Fever I and II showed up then too.

I saw her asst in Dec and Jan and Feb. Nothing was said about the Q Fever. Either she missed it, or she didn't think it was much to worry about.

I am going to try to dig up old tests.

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Carol in PA
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"I am very, very, very good at spotting inconsistencies in arguments. You could say it's my job. And this just did not ring true. "

You are observant and organized.
If I had a business, I would want someone like you as an employee.

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woodstock
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Thank you Carol. I try.

I will have more later.. the more I think of this, the more I think this doc really is trying to take me for a ride.

I can't recommend her. And if anyone knows who I am talking about, I do not recommend seeing her. At least not "after diagnosis".

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