Oh boy...I had a cortesone shot yesterday in my hip...I was diagnosed with lyme almost three years ago now. My blood work now states i don't have lyme, does this mean it went away..lol I am sure thousand of people have asked this question. I am not worried what the cortesone will do? I am not sure if my problem with my hip is my legg perthes i was diagnosed with when i was 5 currently 52 now or if it's the lyme affecting my joints. Also my vitamin D level was real low an 8, should be like 30 or something. I think I could use some help.
JesusFreak,
I second what JackieCalifornia stated.
Lyme is the cause of thyroid and other dysfunction
It's the cause of mine.
I was the picture of health before all this.
My "real age" (the term that is all the rage on Dr. Oz) was determined by my PCP to be 16-17yrs younger than I was. Vitamin and mineral panels were "excellent" and that was at a time when the lyme symptoms had already begun (that was why I was at the doctor's!).
Get rid of the infection, the other issues will resolve themselves.
An ID/lyme Md told me that (one of the few ID docs in existence, it seems, who is relatively-versed in lyme diagnosis and treatment).
The doctor describes it as:
lyme cells can resemble the shape of certain cells in a person's body.
The immune system incorrectly recognizes the body's own cells as those of the invader (lyme) that has entered the body.
and we have an autoimmune reaction.
Like Hashimoto's.
Take away the infectious agent (lyme), the autoimmune reaction stops within a couple months.
This can happen with patients whether it's the shape of their Thyroid cells or cells in the joints, or myelin cells and God knows what else.
**Myelin is the sheath the covers nerves. The process of myelin degeneration is called, demyelination.
Many ppl with an autoimmune misfiring on the myelin sheath suffer any number of symptoms, often those that mimic MS, parkinsons, alzheimers, ALS etc.
Those with neurological lyme, among many other symptoms, can have vision issues, numbness and tingling(neuropathy), loss of dexterity (clumsiness, grasping and hold issues with hands), trouble with balance/walking.
Again, this is from an active Infection. It is not part of what is termed "post-lyme syndrome" by a certain segment of the conventional medical community who treat you with a round or two of antibiotics and set you out to pasture.
Anyway, I hope Jackie or someone in California has assisted you with finding a LLMD (lyme-literate Md). Unfortunately, LL pediatricians are hard to come by.
Hang in there, kid!
What's a LLMD? and are there pediatric LLMD's because since I'm still under 18 no regular doctor will treat me.
and PS, Lyme disease can and often does mess with thyroid levels, so it's a side effect and a symptom of a possible Lyme infection, not the sole ailment.
If you have Lyme, you've got to treat the underlying disease, not just plaster your body with thyroid supplements.
NOTE I am not medically trained, but have been dealing with Lyme and its little friends for more than 3 years now. And I too have low thyroid at times, and I have a chronically low body temp: 96.1.
You say above:
"Thanks for the help, but I got some bad news today (in my perspective), I went to an ID doctor and he says that the other doctors were wrong and I don't have Lyme Disease, and he doesn't know what I have. He said that I was positive for IgM antibodies , but not the right ones that indicate Lyme. I really don't know. He thinks I might have a rheumatic problem. If anyone has any ideas I'm welcome to any opinions."
In my personal experience, ID docs are too often ignorant (and willfully ignorant, at that) about Lyme disease, because the 'standards' they stick to deny the seriousness of Lyme and its co-infections. I consulted an ID doc about a tick I found deep in the back of my leg, and he was completely uninterested in it and also didn't care that I was having a long list of symptoms. He thought I was a head case, and sent me home, telling me *not* to make another appointment, but to call in a few weeks and tell him I was fine. I was not. Testing later done by an LLMD on the tick itself and on me showed that the tick had (and I have) Lyme and a co-infection.
I strongly recommend that you find an LLMD and take your test results to him/her for evaluation. Please don't wait; the sooner you are diagnosed, the more certain the success of treatment.
No, not TMI. Thanks, I had no idea about this. I have a lot of reading to do!
Hi,
There was an old thread on here that I cannot find that was chock full of information. too bad. But I'll take a stab at it. I feel sorta badly hijacking JesusFreak's thread about LD & arthritis.................
Me:
I suspected I had thyroid issues because of the clinical symptoms I had been experiencing--which yes, for some with lyme, it's difficult to distinguish.
But: as my doctor says, you know your body best. and I most-definitely did.
I was fortunate that my sister's former LLMD had been a thyroid specialist.
When I showed her the weird 'puffiness' behind my ankles she spotted it as a clinical sign her Md associated with thyroid. That sx, coupled with others, such as low body temp, dry hair/skin, weight gain that wouldn't budge At All despite a restrictive diet, and looking back, inexplicable weight loss, etc. a few years prior. >>>
pointed to the thyroid. The PCP who dx'd me with lyme was pretty conventional. Despite my clinical sx, he looked exclusively to my TSH (which has never been higher than around 1.91---at least when tested).
Note: my sister's thyroid specialist had told her that he'd seen TSH fluctuate significantly within the same day or hours when ppl were tested within that time frame.
BODY TEMPERATURE--
So, awaiting my first appt with a lyme Md, I began tracking my body temperature.
2 - 3x per day, once immediately upon waking, using graphs like the ones available here:
http://www.drrind.com/forms.html#tempgraph
At that time, my temp was very low, running 95.1 - 96.9 at best.
ADRENAL FATIGUE--
I also knew I'd had an adrenal event, for lack of a better word. A year before I actively suspected lyme, I worked too many days straight and long hours while moving the location of the office I worked for. My adrenals were fried--was how I termed it. Energy/fatigue-wise, I never felt the same after that.
Important, b/c adrenal and thyroid dysfunction are often linked esp. with LD.
The HPA axis is highlighted with LD.
http://en.wikipedia.org/wiki/Hypothalamic%E2%80%93pituitary%E2%80%93adrenal_axis
NORMAL TSH HASHI'S --
Anyway, so armed with this, among other info, I had my LLMD appointment, who was an integrative internist, and she noted the clinical sx and then ran thyroid tests including those for thyroid antibodies. The later were elevated although not considered "high". My TSH was still within the normal range (1.9).
Here's some info on normal TSH Hashimoto’s:
http://thyroid.about.com/cs/endocrinology/a/antibodies.htm
that contains a reference to a study:
http://www.thyroid-info.com/articles/weetman.htm
She treated my adrenals first because thyroid medication can stress compromised adrenals to the point where they can flat-line and can land you in bed with fatigue (if you aren't already).
So: if you have sx of adrenal insufficiency, it's important that you find a doctor who considers this, and treats it before treating the thyroid.
After starting adrenal tx, the Md started me on lower-dose armour thyroid, slowly raising it---to still a low level (lower than I think I needed). The symptoms began to wane.
The technical bits about thyroid function & testing, I have not been able to retain because of my memory issues from neuro-lyme, so I'll leave it to the folks at a website, stop the thyroid madness.
LABS--
Below are recommended tests:
**************************************
http://www.stopthethyroidmadness.com/recommended-labwork/
* TSH - this lab is only for diagnosis of hypopituitary,
NOT to diagnose or determine dose to treat hypo by.
* Free T4 and Free T3 (note the word “free”–important.)
* Thyroid Antibodies:
· anti-TPO and
· TgAb
* Ferritin (and do stress FERRITIN, not just RBC)
* Adrenal Cortisol levels
(recommend saliva tests, not the one time blood test your doctor will do)
* B-12 and Folate, estrogen, progesterone, testosterone, DHEA, Vitamin D (25-hydroxyvitamin D lab test)…plus others your doctor may recommend.
* Reverse T3 (to be tested when your Free T4 is in the upper part of the range with continuing symptoms. You need to do it at the same time you do free T3 to measure the ratio)
****************************************
IODINE---
I’d also look into Iodine testing.
I don't know how valid the testing is considered to be but iodine is essential to the production of T3 & T4. Your thyroid isn’t going to function correctly without appropriate levels of iodine.
http://thyroid.about.com/cs/vitaminsupplement/a/iodine.htm
Integrative doctors and doctors of osteopathy are more-than-likely more open to the concept of treating normal TSH thyroid dysfunction and adrenal fatigue.
**************************************
SUPPLEMENTATION for thyroid disease---
http://www.thyroid-info.com/articles/topsupplements.htm
**********************************
As someone on Medhelp pointed out in a post here(that I can't find), prior to the 1973 thyroid disease was clinically-diagnosed. Editoral: Doctors have become far too reliant on tests in general, ignoring clinical signs and therefore Not preventing disease or disease progression.
I can't deny that a doctor acknowledging my clinical symptoms & treating accordingly has helped me significantly. This is anecdotal, of course, and given the complications with an infectious disease in the mix, we'll see how much of a difference it makes over time.
************************
Here are a few ways to find a doc who will evaluate your thyroid in your area.
I think seeking ones who specialize in natural hormone therapy will get you to a doctor who will listen to you:
Armour thyroid has a search engine for Mds who prescribe Armour:
http://www.armourthyroid.com/con_phLocator.aspx
American College for the Advancement of Medicine has an integrative doctor find:
http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5457441/k.5E5F/Welcome_to_PhysicianLink__18005323688_/apps/kb/cs/contactsearch.asp
DOs (doctors of osteopathy) in your area, depending on their specialty(family practice, internal medicine) may be good to check out for cutting-edge thyroid treatment:
http://www.osteopathic.org/index.cfm?PageID=findado_main
***********************************************
TMI?
Thanks for the help, but I got some bad news today (in my perspective), I went to an ID doctor and he says that the other doctors were wrong and I don't have Lyme Disease, and he doesn't know what I have. He said that I was positive for IgM antibodies , but not the right ones that indicate Lyme. I really don't know. He thinks I might have a rheumatic problem. If anyone has any ideas I'm welcome to any opinions.
Hi,
Could you elaborate on how your thyroid diagnosis was made? What are the antibodies? I suspect I might have some issues with it, but my TSH levels are also normal. I wonder what else i should ask the doctor to consider. TIA
JesusFreak,
Note that lyme arthritis is not what ppl usually associate as arthritis.
As Wonko stated, the symptoms should subside with Lyme treatment.
If you see a rheumatologist for the "arthritic" symptoms, the doctor would most-likely
test your ANA levels.
Which could be elevated with lyme (this happened with one of my sisters). In turn, your doctor could misleadingly treat you for rheumatoid arthritis, administering corticosteroids.
Which can make (lyme) matters worse.
Corticosteriods administered at anything but very low dose can suppress the immune system enough so that the lyme bacteria becomes opportunistic.
What this means is that when the immune system is suppressed, lyme symptoms worsen. Proceed with caution when steroids of any kind are prescribed for you. Check with your lyme doctor first.
Thyroid disease is common in lyme patients. Right now you could test Hyper thyroid, and later, Hypo.
Cycling back and forth between hypothyroidism and hyperthyroidism is characteristic of Hashimoto's disease. If the disease progresses untreated, it can lead to thyroid death.
Most endocrinologists and conventional physicians will not treat Hashimoto's disease, as diagnosed by elevated antibody levels, unless other thyroid function tests such as TSH are outside the normal range.
However, low-dose treatment of such patients has shown to decrease the level of thyroid antibodies, but more importantly, relieve symptoms and stop the progression of the disease.
I have Hashimoto's but have always tested in the normal ranges (TSH) and my T3 & T4 levels have never been particularly concerning to doctors either.
But: I knew my thyroid was off with clinical presentations, coupled with elevated antibodies, and viola. Thyroid tx has helped the symptoms as well.
If you were diagnosed soon after your infection, then you have excellent chances of recovery. Usually the stiffness associated with Lyme does not cause permanent damage, Lyme arthritis does not typically erode the joints like can happen with rheumatoid arthritis. (Unfortunately there are exceptions, esp. in folks who go a long long time undiagnosed.) So even if it is not comfortable, the inflammation in your hands will hopefully clear up with treatment and leave no aftermath.
If after your treatment your symptoms do not all clear up, keep hounding that doctor of yours. Some people require more than the standard few weeks of antibiotics.
Thyroid is often measured by TSH or thyroid stimulating hormone. A high TSH actually indicates hypothyroidism, a low TSH indicates hyper. It's like a lazy person who needs to be yelled at more to work. But maybe the levels your dr discussed with you were not TSH. Still, maybe worth double checking so that you understand your condition.
Hmm, that is interesting about your thyroid levels.
Sounds you have a very careful MD -- that is great news. I know someone who had Lyme when your same age, and the treatment was relatively quick, definitely painless, and successful.
I wish the same for you! Let us know how you do.
The lab results say I have high thyroid levels and the doc says it's hyper.
Joint and muscle pain happens to some of us with Lyme. Yes, I would suggest you talk with your MD so the problems can be addressed.
Are you hyper- or hypo-thyroid? Hyper is overactive thyroid; hypo is underactive, and is not unusual in those with Lyme.