HELP!! Lymes,High PTH,High Antithyroglobulin,Low T4,etc..???

[Lori707]

Had lymes 23yrs.ago with bulls eye rash. Treated for 2wks.with oral antibiotics. Had lymes again with no rash 3 years later. Had IV therapy for 3 weeks. Flash forward 20yrs. Felt sick 2 1/2 yrs.ago and had some symtoms of lymes. NO doctors would give me a lymes test for these 2 1/2 yrs. Developed malaise,lost 50lbs in a few months,got whole body parathesia (pin & needles),got inflammatory arthritis,had 6 bleeding ulcers in colon which they think was due to a clot, fibromyalgia, acid reflux/gerd,bad osteoporsis, etc. Been to most doctors and in and out of hospitals. My RA Factor(rheumatoid arthritis factor) is high. FINALLY a couple months ago I cried to my rheumatologist to please give me the lymes test and he said okay. Guess what? POSITIVE! Next day I went to the hospital to have a Picc Line put in and received 28 days of IV antibiotic therapy. Still not feeling well.

I understand that parasites can give a high RA Factor. Meanwhile, my endocronologist took tests. It seems that I have a real problem absorbing Vit.D. I'm up to 5,000 IU D3 daily and it's still on the low side. It was down to 8.5. I also had been taking 50,000 IU D2 once a week but the doc took me off of that because it wasn't absorbing it.

These are my latest tests:

Choloesterol HIGH
PTH (parathyroid hormone) HIGH  at 82
Calcium now normal at 9.4 (used to be high for years)
TSH 3.660 normal
Thyroxine (T4) Free .75 (ref.range: 0.82-1.77)
Thyroid Peroxidase (TPO) Ab:  8  (ref.range: 0-34)
Antithyroglobulin Ab: 483 HIGH  (ref.range: 0-40)
AST (Live enzyme) 41 HIGH  (ref.range 0-40)

My TSH was fine a couple months ago.
WHAT IS GOING ON WITH ME? Anyone have an idea? Why would my PTH be high? Could I have kidney problems?
Help please.

[22dreams]

Re: *Could my kidneys be bad while my lab numbers are normal? "

I'm not a doctor, but I've heard that both liver and kidney function tests are potentially "so-so" in reflecting exactly what goes on.

Strange symptoms are part of the bargain with tick-borne diseases and can easily be mistaken for other things.

Personally, I wouldn't worry about but rather take measures to detox your body with the help of a LLMD and/or integrative doctor would be the way to go. When our bodies are battling infectious diseases, it's essential anyway.



RE: LLMD
Jackie provided good information.
You can post in the Seeking a Doctor section of the discussion area at lymenet (dot) org. People there retain comprehensive lists of lyme-literate physicians by state.
That site is majorly overwhelming for those starting out. It's one of those situations where too much information confuses ppl more, esp. newbies.

There are doctors in NJ but there are also those who THINK they know what they're doing in that state, so it's best to tread lightly.

THere is a new nonprofit organization that I believe hails from NJ, called "It's About Lyme". If you google it, someone there may be able to point you in the right direction as well.

[JackieCalifornia]

Someone here in your geographic area might be able to send you a private message with an LLMD they recommend.  Or you can try the referral function on some of the Lyme-related websites.  

I think the ILADS [dot] org website has a referral function, as do other sites like lymediseaseassociation and canlyme and others, but I don't know which are best for your geographic area.  

There is a Lyme program at Columbia U medical center in NYC, headed by Brian Fallon, but I have never heard remarks from anyone on this site about how patient-friendly the place is or is not.  

You could try googling "LLMD [My Town, My State]" and may pop something up that way.  

You could also post a new message on this MedHelp site with a request 'Seeking LLMD [City, State // or area as you describe it above]' and ask for a private message with suggestions, since we don't post LLMD names publicly here to avoid causing problems for the LLMDs with those who think Lyme = the sniffles.

Hang in there.  We know what you're going through.  

[Lori707]

Hi and thank you for your indepth help. You asked: "When your calcium levels were high in the past, was your PTH checked as well? was it normal or elevated?" Answer: My serum calcium was high for years until several months ago. My endo put me on calcium pills that no other doctor wanted to in fear that my #'s would go up. They actually went down. My PTH had been climbing for some time little by little until it went into the 70's. When my D was 8.5 my PTH and calcium were normal. My calcium is still normal but as my D slowly climbs, so does my PTH. I decided on my own that it's secondary parathyroidism. But to what???

I have questions:

- I've thought of kidney disease but my labs are normal and I have no trouble urinating. I drink a lot of water. *Could my kidneys be bad while my lab numbers are normal?

-I am looking for a LLMD but can't find them. I'll go to NJ,NYC,Philadelphia,Conn. and counties around those areas. I used to live up in the hills of NY near Conn.and that's where I got Lymes the first time. PLEASE HELP ME FIND A GOOD LLMD. I'm desperite.

**JackieCalifornia: I will most definately look into coinfections as soon as I find a LLMD that would give me those tests.

Thank you all for making me feel not alone!

[22dreams]

Lori,

I would suggest looking into co-infections as well.

Vitamin D levels are usually low in people with chronic illnesses.
This is a chicken-egg debate right now. Conventionally doctors like to say Vit deficiency causes disease, but there have been studies into it being the body's natural reaction when under assault. And it will try to retain that stasis point until the disease begins resolving.

Vitamin D is actually more of a hormone and not a vitamin at all.
Because of recent studies, some doctors are being more cautious and only having their patients supplement with D3. Vitamin D is a whole other conversation.

Lyme and co-infections can wreak havoc on any system in the body.
the HPA axis is a common target for it.

Did your doctor say anything about your THYROID?
with those #s, problems with your thyroid need to be addressed.
Very good indicators of thyroid disease which is VERY common in Lyme patients.

Your Anti-TG Ab (antithryoglobulin) is off the charts.
This is a test for the antibodies to proteins in the thyroid.
In effect, it indicates your body is attacking your own thyroid.

A type of thyroid disease. Smacks of Hashimoto's.
although it can indicate type 1 diabetes among other things.

If it is Hashimoto's you need to be taking supplemental thyroid hormones to try to lower the antibody #s to compensate for the autoimmune reaction.

TSH in the case of Hashimoto's is irrelevant.
and IMHO, so-called "normal" TSH #s are pretty much useless in preventing progression of disease anyway. Even though TSH is currently used as some sort of gold standard, levels can fluctuate within hours.

These sentiments are not echoed in the conventional medical community.
Speaking for myself, I felt better treating based on slightly elevated antibody levels. Nowhere near where yours are.

You should probably be checked for other thyroid antibodies. This site contains suggested labwork that is decent:

http://www.stopthethyroidmadness.com/

You parathyroid #s are also high which, among other things Unknown to me I'm sure, points to dysfunction of the parathyroid gland.

When your calcium levels were high in the past, was your PTH checked as well?
was it normal or elevated?

Normally, your calcium levels would be high along with high PTH, BUT
it is also Normal with hyperparathyroidism to have calcium levels that are high one time it is checked, and normal the next time. ALL patients with this disease will have calcium levels that change from day to day, week to week.

Most endos don't acknowledge this so won't take measures to deal with the parathyroid in this case.

It's my understanding that the high PTH could indicate kidneys combined with other tests and symptoms. You'd have to ask your doctor.

Your AST is a smidge above normal range which could indicate any # of things but could point to kidneys too.

Have you tried detoxing measures of some kind to see if it helps?

So: just some suggestions on what to look into.

Find a LLMD -- lyme-literate doctor. Rheumatologist usually aren't the best bet when it comes to tick-borne infections. However, you were very fortunate you were placed on IV like you were. that is rather rare.

Find a LLMD---particularly one who knows something about the thyroid with a more integrative approach. and a PCP who is more on the integrative side of things.

Unless you find a endocrinologist who comes recommended, I find that most use markers that are useless in preventing thyroid disease from progressing.

Definitely let us know what happens. If you want help finding a LLMD, people here can point you in the right direction.

[JackieCalifornia]

Sorry, this is beyond my ability to parse test results.  

Have you been tested for any coinfections of Lyme, such as babesia, ehrlichia, bartonella, and a few others?  Lyme seems to bring along its little friends when it invades.  If your rheumatologist is not comfortable ordering these tests, then I'd find me an LLMD asap and see what s/he has to say.

Let us know what happens.