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Lyme Disease
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Posted 10/19/2017 11:10 AM (GMT -5)
I am sorry for the long post, I will try to make it as short as I can. I am not sure when I was infected with Lyme. The only time I remember a tick, I was about 9 or 10 (I am now 34) and I got bit on my foot, my dad removed it with Vaseline and a match (I now know how big of a mistake that was) but I don’t remember a bulls eye rash and don’t think I had any health issues at the time.

In 2001, I was diagnosed with hyperthyroid caused by Graves disease. I saw a few endocrinologists but they all wanted to give me the RAI treatment and they were not interested in treating me with anti-thyroid medication so I decided to just live with it. I finally found an endo that would treat me properly in 2015.

After treating my thyroid and getting it back to normal, the only symptoms that improved were the heart palpitations and the hand tremors. I still had so many other symptoms and started to get new symptoms. My endo didn’t think my symptoms were related to my thyroid and sent me to a neurologist.

I was sent for blood work and an MRI. The MRI came back normal but my blood work showed I had Lyme, the neuro dismissed me. Thankfully, I received a call from the health department confirming my positive IGM diagnoses. If it wasn’t for the health department calling, I would have believed my neurologist.

My labcorp test showed IgM bands 23 and 41 present. I emailed ILADS and was able to make an appointment with an LLMD. Doctor started me on 100mg of Doxy 2x a day. A month later he added Tinidazle, 500 mg 2x a day (weekdays only) but it made my anger/rage worse so he took me off after a month. He then put me on Minocycline, 100 mg – 2x a day and Cefdinir, 300 mg – 2x a day for 2 months and then back to Doxy 100mg and Rifampin 300 mg 2x a day. I was on antibiotics for 6 ½ months with very little improvement.

Doctor decided to take me off medication and take a fresh look at the situation. He retested me for Lyme through MDL labs but it came back negative.

He now thinks I have mast cell disease but told me that there is no testing for it. He put me on Claritin, Zyrtec, Pepcid, Quercetin and Cromolyn to see if I improve. It has been 2 months and the only symptoms that have improved are my night sweats and nausea (but the nausea comes back every month when my symptoms flare).

What should I do? I don’t understand why he would stop treatment for lyme because of a negative test when I already have a positive test. But he is willing to treat me for mast cell even though he won’t test me for it? It doesn’t make sense to me.
Posted 10/19/2017 12:32 PM (GMT -5)
You had an embedded tick .

Years later - you were diagnosed with Graves Disease, treated, but still had symptoms...and continued to get new ones.

You tested positive for lyme..with bands 23 and 41 - which = CDC Positive.
You DO have lyme disease.

Your LLMD retesting you shows he really isn't lyme literate. Not getting results in 6 1/2 months happens....it may be that you have Babesia...which needs to be treated. Also, were you detoxing during the 6 1/2 months?

Mast Cell disease - is a difficult one. Knowledgeable Dr.'s are few and far between.

Even if you do have a mast cell issue - there is a cause for it. It's likely that Lyme is causing the overactive immune response.
I think it's a delicate balance between treating the infections...and not causing the mast cell reactions.
Posted 10/19/2017 1:12 PM (GMT -5)
When I first saw the LLMD he tested me for Bartonella and Babesia through Igenx and came back negative. He decided to just treat lyme. Later on he decided to add Rifampin for Bart and Liposomal Artemisinin for Babesia. I didn't feel any different on the Artemisinin. The rifampin made me herx but no real improvement.

I did detox during the 6 1/2 months - espon baths, sauna, water with and without lemon and charcoal
Posted 10/19/2017 1:19 PM (GMT -5)
LymeBug21 -

You MD is probably being overly cautious to pull back on abx because MDs who treat Lyme are easily targeted by the system. he also doesn't sound very experienced--there are many "ILADS" MDs who aren't exactly Lyme specialists --some are in it for the business and some are trying to fill a gigantic need.

There's no question that you have Lyme - as Girlie explained.

And I also agree with her that regardless of mast cell responses, you still need to reduce the infection(s) if they are causing symptoms.

Doesn't sound like you've been tested for coinfections, which are very common with tick transmission of Lyme. Here is a good list of symptoms - fill out this questionnaire to help understand what other infection might be present:
Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

You didn't mention what you're doing to detox, which can sometimes make-or-break effectiveness of antimicrobial treatment. Sometimes we overload the immune system with treating too aggressively. Detoxing generally helps your body process the antimicrobials a little better.

How is your GI function? If you have any GI issues, you're likely to have increased sx and also problems absorbing what you're taking. There are some foods that exacerbate a histamine response common with mast cell issues so that is something to look into.

Do you have any signs of a high viral load? Any history with viruses like EBV? Did you get any testing done?

-p
Posted 10/19/2017 2:29 PM (GMT -5)
From what I was told, my doctor has been treating lyme for about 5 years and he started because his wife was infected. I don’t know how many patients he has treated for lyme. I decided on this doctor because he takes my insurance and I can’t afford to pay out of pocket.

The only co-infections I was tested for was Bartonella and Babesia through Igenex but it was negative and I redid the test through MDL labs (6 ½ months later) and added anaplasma but that was negative too. I will check out the Jernigan’s symptom list and fill it out.

I do some detox but I could be more diligent about it. I only drink water (I cut out coffee, tea, juice, etc.) and will add lemon when I am home. I take probiotics, activated charcoal, baths and saunas. I also cut out sugar, dairy and gluten. Sometimes I will cheat with gluten but have been very proud of myself for being able to stay away from sugar.

As for GI issues – I have been very nauseous but the cromolyn has helped for the most part. I do get bad stomach pains after I eat and have a poor appetite. I have gained 20 pounds since starting treatment but don’t eat enough to feel like I should be 20 pounds heavier.

I don’t know how to tell if I have a viral load. I have never been tested for EBV or other viruses that I know of. The only tests doctors have given me are thyroid, ANA, and CBC. I have had positive and negative ANAs, my homocysteine level was high (18.2) for 1 doctor and the other one just laughed at me. The CBC usually comes back with high WBC (not much higher than the range). I have had high platelets, high RDW and high lymphs absolute. I had high prolactin once but retested and came back normal. I had low estrogen was using estrogen cream for a little over a year. I was low on vitamin D but that has gone up.

I can post any test results just need to know how.

Thank you so much Girlie and Pirouette for helping me figure this out!
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