Dr. F says No to Lyme…

[hopefulmama]

Hello all,

If there is some kind of spiritual component to my healing process, the lesson must be about having to learn to trust my own intuition or follow my own gut.

So far, none of the answers that I have gotten from any doctor add up, support each other, or give me a clear path to travel forward.

I left a family vacation this week for 24 hours to see Dr. F in Riverside. I can not say enough wonderful things about this man. Those of you who see him know how amazing, kind, wise and intelligent he is. Thank you so much for encouraging me to go. For those who have not had the pleasure of his acquaintance, I highly recommend him.

Dr. F gave me a thorough physical and checked all of my bloodwork. Here are the main findings:

IgM and IgG + for Mycoplasma Pneumonaie,
ANA mild positive with titer 1:40 and speckled pattern*
Thyroid antibodies sky-high
Raynaud's confirmed
No scleroderma symptoms seen by Dr. F
He believes flu shot is a main culprit in my illness, insisted I never have another flu shot in my life
He wants to follow up with me in late November

*He said this is normal for 30% of population, and he does not think it significant at present.

Dr. F said he was not going to treat me for the mycoplasma. He said the doxycycline would be hard on my esophagus.

We also had quite a talk about Lyme and IgeneX, and for what it is worth, he said that his clinic has had a number of false positives through IgeneX and he did NOT think that I am suffering from lyme (contrary to what the LLMD's PA said in my town).

Now take all this with a grain of salt, as I am taking it with a grain of salt.

Dr. F said that LLMDs see lyme everywhere, and that they believe it can cause all kinds of rheumatic symptoms similar to scleroderma, etc. He said that in his opinion, this is simply not true. He highly recommended Dr. H in Redwood City as an excellent physician and said that he has sent several patients with Lyme to him.

However, he said that there are 200+ species of borrelia some of which are transmitted by other vectors such as mosquitos and only one causes Lyme. He said he was sure in my case that I do not have lyme and he suggested that I cancel my appts with any LLMD.

Ugh, right? Here is a wonderful dr that we all love and respect, and my mom was really wowed by him… and he said, let go of the lyme. The antibodies are showing a false positive.

So where does this all leave me?

Well, about the same place I've been.

I have a mycoplasma infection but no treatment.
I may have lyme, but no treatment.
I have low adrenals, but not low enough apparently to need steroid treatment (thankfully)
I have Hashimoto's thyroiditis, but again, they won't treat me because I am too tiny/thin.

My naturopath is going to follow up with me using supplements and transfer factor for mycoplasma. He does something called “terrain drainage” with the transfer factor and then follows up with homeopathics to process toxins released as the bacteria interacts with the transfer factor.

My acupuncturist is going to keep working on strengthening my lungs and gut.

I'll be getting news back from Dr. B the esophageal specialist in Sacramento in about 40 minutes about whether I have EE or just acid reflux disease. Manometry scheduled at the end of August.

I've canceled my appt with LLMD Dr. H's assistant. I am going to schedule an appt with Dr. H himself in November, I now understand that seeing the assistants is not the same thing as seeing the doctors themselves. It is worth the wait to get high quality advice.

I am still hanging out in limbo. Tired, and hoping to get some rest and find healing from within soon. This journey is not straightforward, I guess… at least not for me.

Sending you all much love and healing on this beautiful day.
A

[PhilC]

[user=2523]hopefulmama[/user] wrote:

We also had quite a talk about Lyme and IgeneX, and for what it is worth, he said that his clinic has had a number of false positives through IgeneX and he did NOT think that I am suffering from lyme (contrary to what the LLMD's PA said in my town).

How does he know they were false positives? On what basis did he make that determination?

[user=2523]hopefulmama[/user] wrote:

Dr. F said that LLMDs see lyme everywhere, and that they believe it can cause all kinds of rheumatic symptoms similar to scleroderma, etc. He said that in his opinion, this is simply not true.

I suspect the LLMDs are right and he is wrong. There are quite a few people here on this board who are living proof of what he claims is “simply not true.”

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[hopefulmama]

Yeah, Phil – I know what you mean.

I am not posting this because I think he is right.

I just thought, given that he is one of the major AP doctors in the country and the world following in Dr.Brown's footsteps, that people on the bulletin board would be interested that he has this opinion of IgeneX and lyme.

I am still planning to go see the LLMD later this year.

So glad that many people are healing thanks to lyme treatment.

Best wishes!
Andrea

[reesak]

wow, I just was diagnosed with Lyme, too, and this kind of troubles me.  My doctor is a medical doctor who is also a functional medicine doctor who has treated many, many Lyme patients (I'm in Minnesota) and he trusts Igenex.  I asked him point blank if there are any that come back negative and he said that there were many that came back negative.  So, the way I look at it, a year on antibiotics for Lyme disease is worth a try and probably won't change the course of my RA if I do indeed have it.

 

I hope you find some answers.  All of this is so frustrating. 

ReesaK

 

 

[reesak]

Also, your weight should have nothing to do with treating your thyroiditis – if it is affecting your health, you should be treated for it.  Untreated thyroiditis must affect other areas of your body as well. 

 

ReesaK

[hopefulmama]

Hi Reesak,

I really appreciate your note because I am sitting here feeling really troubled by the whole thing as well.

I agree with you that antibiotics probably won't hurt, and I was 100% willing to go on them, to follow the AP closely. I asked Dr. F more than once yesterday if it wasn't important to treat the mycoplasma and was truly surprised when he said he was not currently going to offer me treatment. (Obviously he wants to re-assess in a few months.)

I respect his opinion as he is one of the experts on AP for mycoplasma and RA in the world. At least 10 people on this board advised me to go see him, which is the only way I knew about him in the first place.

It is confusing and disturbing to me to think that I *may* have lyme and need treatment and not be getting it; but then again, I *may not* have lyme and the LLMD in my town was willing to give me abx within 3 minutes of meeting me.

That was one part about my appt with the LLMD's office that was off-putting to me, before I even met with the PA, the nurse checking me in to their clinic asked what medications I was on and then if I needed any refills from their office. The doctor hadn't even spoken to me yet or taken me on as a patient, but they were willing to give me drugs. That really raises a red flag. What if I had said that I wanted refills on powerful narcotic meds or steroids or something that I might not even need?

I keep coming back to the oath doctors take when they get their license. “First do no harm.” I have to believe that if Dr. F of all people chose not to give me doxy and then told me to discard the lyme diagnosis, then he truly thought that abx could (at least at this time) be more harmful to me than curative. I appreciate his caution, and given that he has given so many other RBFBB members abx, he is obviously not opposed to abx treatment.

[hopefulmama]

p.s. about the weight

I am currently over 10 lbs underweight and when they put me on a T3 for my hashimotos, I lost a significant amount of weight within weeks. All Drs I have seen agree that it would be irresponsible to put me on T3 or T4 as my thyroid levels and TSH are normal, just the TPO antibodies and thyroglobulin antibodies are off the charts. I have Hashimoto's but not currently hypothyroidism.

Anyway, I don't want to speed up my metabolism any more than it already is! When I was on the T3 I went hyperthyroid and that was far scarier and had many bad side effects.

[Suzanne]

Lyme is a clinical diagnosis – “diagnosis based on a study of the signs and symptoms of a disease” – so all the tests can do is tip your symptoms in favor of Lyme over something else.   

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Suzanne]

I remember seeing Hashimoto's linked to some mycoplasma, but it storming here and hubby is saying turn the computer off!

Maybe Justsaynoemore will be around and remember what I'm thinking of, but I'll look for it later.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[hopefulmama]

Suzanne,

Thank you so much. I can't even tell you how much better that post made me feel. You are right. Antibodies do not comprise a diagnosis. Dr. F gave me a thorough physical examination and listened to all my symptoms. So, his clinical diagnosis was mycoplasma infection.

The tricky thing is that sometimes symptoms seem to overlap between clinical diagnoses.

I'm glad to have caring and experienced doctors to decide for themselves what my symptoms indicate, since I myself find the whole thing a bit baffling.

I do look forward to hearing what the LLMD in Redwood City thinks when he sees me later in the year.

ok I'm going to go relax now. we are on vacation and i haven't been able to think about anything but this since yesterday. it is time to let go and try to enjoy the sunshine and my kids.

p.s. Yes, I also read that the positive ANA with speckled pattern has been linked to Hashimoto's as well. It seems connected.

[PhilC]

[user=2523]hopefulmama[/user] wrote:

Dr. F said he was not going to treat me for the mycoplasma. He said the doxycycline would be hard on my esophagus.

That makes no sense to me. What about using azithromycin or clarithromycin instead?

[user=2523]hopefulmama[/user] wrote:

I have Hashimoto's thyroiditis, but again, they won't treat me because I am too tiny/thin.

Hashimoto's thyroiditis is one of the diseases that has been successfully treated with LDN. You may have already been aware of that, but in case you weren't I thought I'd mention it.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Suzanne]

[user=2523]hopefulmama[/user] wrote:

The tricky thing is that sometimes symptoms seem to overlap between clinical diagnoses.

But in my opinion, everything overlaps Lyme symptoms outside of a bull's eye rash.  Long ago, I started including “having a bad day” as a Lyme symptom.  It is unfortunate that it has become so broad.  Lyme sufferers have all the symptoms, I have no doubt, but are they all from Lyme?????  (I have more symptoms that my daughter with the pos Igenex test.)   It is very frustrating, but I know I don't need to explain that to you!

I think the myco associated w/Hashimoto's is h. pylori, here is what I found:

http://cat.inist.fr/?aModele=afficheN&cpsidt=2261826

http://www.springerlink.com/content/h85046434u474374/

There is a more recent, more concise, more layperson-friendly article out there somewhere, but I'm sorry that I can't find it tonight.

Enjoy your vacation!

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Parisa]

Lyme disease really needs to be replaced with the term Tick Borne Disease.  It is naive of doctors to think that a tick can only pick up and pass on one disease.  Ticks can pass multiple infections:  borrellia, babesia, mycoplasma, anaplasma, rickettsia…and I'm sure they can pass more than one strain of borrellia at a time.  Add into this, being bitten by more than one tick, predisposal to autoimmune conditions, exposure to environmental toxins and you have a good explanation why one person's Lyme disease is minor discomfort and someone's else Lyme disease is life threatening.

Good LLMDs take all of these factors into consideration and do not have a cookie cutter approach to treatment.  My husband reacted favorably to antiparasitic and malaria type drugs which we believe was probably Babesia.  Are we a hundred certain, no, because testing is still inadequate.  He was treated based on symptoms and response to medications.

Many of us have had to bounce from doctor to doctor to find someone who could best suit our needs.  We made a similar journey at the beginning of my husband's treatment.

[Parisa]

I don't want to get into the nitty gritty particulars of the LLMD's office you went to (for many reasons, one especially that the LLMDs are being persecuted and prosecuted and we can't afford to lose any more of them) but as far as the nurse asking you what refills you needed that might have just been her getting paperwork organized for the doctor so the prescriptions aren't forgotten.  Asking about prescriptions doesn't guarantee a refill.  I used to work as a medical interpreter and made the rounds to a lot of doctors offices and that is not an uncommon procedure. 

[redrock]

I do have to say that there seems to be a Lyme frenzy going on the past few years, much like with Epstein Barr  in the '80s. I had some peculiar Lyme labs a few years ago, posted them on a Lyme website and the people there were almost rabid in their insistence that I must have Lyme, despite the fact that an infectious disease specialist (albeit not a “LLMD”, but there isn't one in my area) said I did not have it. I couldn't figure out why these people, strangers to me, were so insistent for me to join the Lyme club. And I do have to wonder why there is only one lab in the USA that is considered truly capable of doing these tests.

I just don't know. I will have the Igenex test, and I assume they will find me positive, because, well, that's what they do. But I am VERY skeptical. I could say the same thing about the current adrenal fatigue frenzy going on on all the thyroid sites.

[Author]

Posts