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Posted 9/29/2017 2:51 PM (GMT 0)
I went to a LLMD Doctor he did Igenex test.
It came back
IFA Positive
IgM 41 I
IgG 41++
Western blot overall said Negative.

Here is the story, I am very overwhelmed with all of this. I have read a lot of information, I am well informed but I find it stressful being my own health advocate, but you have to these days. I just need to write this to get it out of my head. If you have any thoughts or answers I would gladly like to hear them.

Dr said that he thinks I have clinical lyme. A month ago he put me on high doses of antifungals. Diflucan and Nystatin. I cannot tolerate most drugs.(it has always been this way) I usually get all the side effects or worse. I got sick on these drugs. He thought it was a herx reaction. Since my kidneys hurt so bad I got off of them. knowing my body I felt it was a reaction to drugs not herx. My Dr is very busy and can't see me till December but he communicated through email. He says he wants me to finish round of antifungals than take another week of Nizola antifungal. Then if I am not feeling better then we can do 3 antibiotics to cover all 3 borrelia forms.
My concerns and questions:

1. If I do have lyme why not put me on antibiotics right away. If I do the antifungal treatment I will be on that for a month before I see if he puts me on antibiotics...Is this healthy. My lyme is already given me neurological issues. Is it healthy to just let it be for another month? I am very concerned about permanent nerve damage or problems.

2. Isn't 3 antibiotic a little excessive? especially for a person who is prone to get sick from medicine. The only antibiotic I tolerate well is penicillin??

3. I had two ticks in 2013 and then I had one this past july. What if this isn't chronic lyme from 2013 but a recent lyme infection...then I should just be put on antibiotics immediately right??

4. What if it isn't lyme? I only show band 41 that is not specific to lyme. I am worried of starting lyme treatment and it being rough on my body only to find out my symptoms still remain because something else is wrong with me. or having to use harsh antibiotics when I could have use more friendly antibiotics because it is not lyme?

5. I feel like he is treating this like it is going to be a hard to beat thing and I understand in a lot of cases it is but what if it is not? I know people who have had it for 6 years taken a round of antibiotic and they get better and have no problems....no everyone has the issues with Chronic lyme. Why not just try antibiotics and see if that helps. I know 6 months ago I was on pencillin for a sinus infection and that did make me feel better.

6. How do you know you have a good LLMD? He cannot see me for a follow up for 4 months...is this normal? I thought if I had lyme I would be in his office and he would be treating aggressively, not taking his time. It took him over a month to get me my results.
Posted 9/29/2017 3:06 PM (GMT 0)
Hi somegirl - I wanted to say hello and try to give you some reassurance.

If you haven't read the new to lyme tab at the top of the forum, start there.

If the Igenix Western Blot came back negative for both IgG and IgA, then I'm not sure you do have lyme, but some LLMD's will treat based on a clinical diagnoses and I'm not a doctor.

I can understand your concern about antibiox given your reactions, but most LLMD's treat lyme with 2-3 antibiox if they go that route. There are several herbal protocols and you can explore these with your LLMD or on your own.

My LLMD had me start with an anti-inflammatory diet before starting any antibiox. My main symptoms were muscle pain, twitches and pulses, light and sound sensitivity and headaches.

Then I started on doxy and tini.

The diet alone made me herx, and I was detoxing and already eating fairly clean.

What are your symptoms?

I personally think 4 months is a long time for a follow up appt. I was seeing my LLMD every few weeks at first, and never longer than 8 weeks right now. I started seeing him in March of this year.

Please tell us more and continue to ask questions. You're in the right place.

Post Edited (Kat1000) : 9/29/2017 9:28:23 AM (GMT-6)

Posted 9/29/2017 3:20 PM (GMT 0)
Thanks Kat1000
I think due to my symptoms and having tick bite and because my IFA was positive and I had band 41 show up he thinks I probably have lyme.

These are my main symptoms
Muscles that won't loosen up in shoulders and neck,(mostly on right side) even with therapy, exercise and diet
Trouble with Breathing- not short of breath but takes effort to breath
Problems with voice- using wrong muscles- nothing is wrong with vocal chords but have vocal fatigue and cannot sing due to muscles and breath. Talking too much wears me out
Sometimes have swallowing issues
Occipital nerve issues
Nerve pain in scalp and random nerve pain in legs
Really bad Fatigue
swollen lymph nodes
Back of the head headaches
Brain tired
Become very clumsy- drop things a lot
Have a lot of symptoms of hypothyroidism but thyroid has been tested.
Posted 9/29/2017 3:31 PM (GMT 0)
Others will be better with your symptoms than I am. Any type of breathing is usually indiciative of babesia, one of the common coinfections. Swallowing too I believe.

I've had the shoulder and neck pain, back pain and severe pain in soles of my feet and I have lyme and bartonella.

Some doctors will treat all 3 b's at once (borreala, bartonella, babesia).

I'm sensitive to antibiox too, so instead of diflucan I'm taking probiotics twice a day and a drop of oil of oregano to avoid candida.
Posted 9/29/2017 3:32 PM (GMT 0)
Clinical lyme just means that he does in fact think you have lyme in spite of a negative test. He has determined you have lyme based on your symptoms or "clinical" examination.

Be happy for this. Many doctors won't treat unless you are test positive.

As for the antifungals, I believe he is being proactive. He must have found some indication that you have yeast or fungus. He knows that giving you antibiotics on top of a yeast/fungal problem will not cure your lyme and only make your yeast/fungal problem worse. Making your yeast/fungal problem worse will make your lyme worse.

He is building the foundation to cure you, anyway that is how I see it.

Make sure you ask him everything. Good communication is important. "Why" is a great question to ask every time he says to do something. This understanding will ease your mind. An eased mind helps heal an ailing body.
Posted 9/29/2017 3:41 PM (GMT 0)
I don't have much to add as far as your treatment goes. If you can find another doctor who can see you sooner, that might give you more peace of mind.
My doctor always wanted to see me in a month. But his schedule was always full for two months. So I started booking my next TWO appointments (1 month apart) every time I went in, then I had no problems with follow-up.
If he is still practicing general medicine and/or accepting insurance, this cautious approach might be because of that. Insurance puts a lot of red tape on how they can diagnose and treat, he might be a bit cautious about doing too much too soon.

I've seen a lot of posts lately about whether doctors are on the right track, as their treatments seem unconventional or different from most Lyme protocols.

What I would suggest for that is to go in with your list of questions/ latest symptoms every time, write down:
What meds they prescribe
What order you should take them
Should you start one at a time and add slowly?
Which can be taken together, which should be separated
What should be taken with food
What time of day/meal do they recommend taking each pill with.
What side effects/ reactions can you expect

And ASK:
WHAT IS THIS TREATMENT TARGETING?
And
WHAT IS OUR NEXT STEP IF THIS GOES WELL/NOT WELL?

Don't forget to ask what he's thinking and ask WHY he's taking that approach. I know on the spot, it's hard to remember (which is why I write everything down), and emotional and confusing (which is why I'm encouraging you). If the doctor won't answer or isn't understanding about your confusion, brain fog, and emotions, Id say find a new doctor. That process is awful, but my favorite doctors make me feel better just talking to them- they are confident, understanding, and have a good personality. If they make me want to cry with intimidation, I don't go back. Nobody got time for negativity.
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