posted
Just wondering how many of you have had ongoing fatigue symptoms before your Lyme diagnosis? If so, was the fatigue mild or severe? Can a person have Lyme without any fatigue at all?
Also, hair loss-is this typically a Lyme symptom? Has anyone lost hair with this disease? I have a sister with suspected Lyme (no definite diagnosis yet, other than 41Igg positive on WB) who is losing hair by the handfuls, and she is pretty scared about it.
Her Thyroid numbers were normal at her last blood workup, so not sure what could be causing this for her other than a chronic illness, like Lyme.
I know that Lyme can cause hormone problems, and I'm figuring that's why her hair is falling out.
Thanks everyone!
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
I had severe fatigue. I mean SEVERE. I did not have hair loss. yes, Lyme can cause SO many hormone imbalances. I hope that your sister finds an LLMD and gets a proper diagnosis!
has she ever had a bullseye rash? That is not necessary for diagnosis, but if she did, then she does have Lyme and needs to see a Lyme Literate Medical Doctor.
posted
My hair fell out when I first had Lyme looking back. I was undiagnosed for two or three years, during that time I had thinning hair -- now it is coming back four months into treatment.
And the fatigue also crept up on me. Over those years I became weaker and weaker and more and more tired, I could tell this mostly by what I could do before and what I was no longer able to do. It is very subtle and comes on gradually. At least it did for me.
Then when I first started the doxy I was down for the count due to the herx for a few weeks, and all during the treatment, addition of other abx, etc. fatigue and weakness is my constant companion.
My thyroid was always normal as were all my other labs -- other than an elevated inflammation factor -- until the Western Blot finally showed positive for Lyme.
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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posted
p.s. If by chance she has just had a baby -- her hair could be falling out because of that -- it is normal following birth after about a month -- Also it could account for her fatigue..... Just asking.
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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posted
Fatigue has always been my main symptom -- more than joint pain, more than any other "typical" lyme symptom. In fact, I was initially going to a Chronic Fatigue/Fibromyalgia treatment center, they ran tests for a number of conditions that can present as CFS, and they were the ones who tested for Lyme (to rule it out -- but then I was way, waaaaay positive for IgG and IgM! Oops!) I have also had some problems with hair thinning.
As for the thyroid -- when you say her thyroid levels were normal, what does this mean? Did she have only her Thyroid Stimulating Hormone (TSH) levels measured, or did she have a full workup? Many doc (particularly integrative, DO's) argue that (1) testing for thyroid stimulating hormone only is not sufficient to detect all thyroid problems; (2) The "normal" ranges are actually very broad, and someone near the low end of normal may respond very well to thyroid supplimentation; and (3) A broader array of testing may be necessary (e.g., testing for reverse T3).
I have been taking thyroid bioidentical hormones for a few months, and while it seems to have helped a bit with hair loss, it has had only a minor impact on my fatigue. And I've actually *continued* to gain more weight! I can't fit into clothes I was wearing when I started the thyroid, which is weird -- I think perhaps it is water retention rather than actual fat?
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
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posted
I had fatigue and hair loss when I was really ill. My hair started coming back with Lyme treatment.
My thyroid came back barely in range, so my LLMD tested the whole thyroid panel, and it was barely in range across the board, so technically "normal." He started me on thyroid meds to get me more into the ideal range and I felt much better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I'll have to tell my Sis that the hair loss could be from Lyme, and not to worry so much. I know that symptoms are different for everyone-and she has so many of them.
No, my Sis has not had a baby-her youngest is almost 11. She's never had a bullseye rash-neither did my Hubby, who is also struggling with Lyme.
She does have an appointment next week with a Nurse Practitioner who specializes in Lyme, and there is an LLMD Doctor in the practice as well.
Seeing the NP instead of the LLMD is saving her a lot of $$-something she doesn't have much of, so it's better than nothing. She will at least get an initial consult,Igenex bloodwork, and some sort of diagnosis (positive or not) and a decent treatment plan.
She has every Lyme symptom imaginable-she's very sick, not working. She's on Doxy for now,until her appointment, and all of her symptoms are barely there at the moment because of the Doxy-the Doxy is the only thing that makes her days bearable enough to get through.
I figured with Lyme some fatigue would be present, given the seriousness of this disease.
I read a blog a while back that someone wrote who had Lyme and this person said that they never had the fatigue, that they were one of the lucky ones that never suffered from that symptom. I figured a small minority of people just never got the fatigue.
Of course I asked this question because of myself-I post on here with lots of questions regarding my Hubby and Sis, but may or may not have the disease myself, only because of a positive 41Igm on a WB I had done.
I have no fatigue at all-at least not yet, and hopefully never will. Until I get enough symptoms that start really worrying me, I will assume I'm okay for now. I have plenty of energy to take care of my Hubby, and I guess that's what matters most right now!
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
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posted
I'm not sure about my Sis's Thyroid workup. I don't think that she really had extensive testing done, other than the T4 and TSH levels, whatever tests most GP's generally run.
She did have a Thyroid scan, because she's had a goiter for many years, just to check for nodules.
I'll have to tell her to check into more serious Thyroid testing, just to be on the safe side.
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
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posted
I have tested positive for lyme and bartonella 4 months after I became very sick. I had extreme fatigue which is receding and my hair feel out by the handfuls about 6 - 7 months after getting sick. I've been sick for 10 months now, the hair loss has stopped and I may even see some regrowth, more gray than brown but that's fine. My thyroid T4 and TSH were within range but my doc just put me on .5 mg of armour thyroid med as a booster and it has really helped with my energy.
Good luck with it all!
Posts: 27 | From SW VA | Registered: Aug 2008
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posted
My TSH was and still is within the conventional "normal limits". When I finally saw a LLMD, she tested me for thyroid antibodies. Positive on 2 out of 3 checked. Diagnosis: Hashimoto's.
it is very informative about the lousy labs to diagnose thyroid disease. Most patients are either undiagnosed or under or poorly treated.
Sound familiar?
Given the labs, like lyme, it's best to see a md who knows what s/he is talking about where clinical symptoms over-ride the insurance guidelines for diagnosis (inferior tests and interpretation).
Posts: 571 | From Massachusetts | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
It may take a while, but I am proof that hair can return to normal.
And, yes, it is the rare lyme patient who is not plagued by fatigue so severe that it's nearly paralytic at times. I have found when that happens I just have to wait it out and I can move again after a rest.
Good luck you your sister. It's so nice of you to help by researching some of this.
This book will answer many questions and offer some solutions:
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
When I first started out on my lovely journey last summer (still not diagnosed, BTW), I was dead tired all the time.
I'd get up in the morning and just get by till it was time for my younger son's nap. Then I'd put in a video for my older son and just crash.
Even though I'm not on treatmetn yet, I'm not AS fatigues now, although I still have little to no energy for anything beyond the usual.
And hair loss, YES! Every time I wash my hair in the shower, I have a pile of hair in the drain.
At first I thought it was from having a baby, but the baby is 2 years old.
My thyroid levels are supposedly normal too. And so are my hormones, supposedly.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
This screams thyroid issues!!!
I was just diagnosed by my new LLD. Within about two weeks of being on Armour Thyroid, holy cow, my hair stopped falling out. It was a shocking change.
I am so used to getting up every morning and pulling out at least three fistfuls of hair to prevent it from falling all over the house.
Suddenly one day, not a hair came out. I am still amazed by this.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
It's a good idea to assess the T3/RT3 ratio as well...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Tracy .. I'm glad you got some Armour and are being helped with the thyroid issues!!!
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella. Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.
RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome, and Papilledema. BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly. Possible lab findings: The following may show up during standard testing: Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes. X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies strongly suggestive of lymphoma do occur. Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the parenchyma.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
yes, have lost my THICK HAIR...
yes, thyroid is symptom of undwer/over reascrive thryoid.
my fatigue is 24/7; i get NO DELTA 4 sleep where my body rejuvenates and i wake up feeliing refreshed!
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
This sounds like a thyroid problem, which Lyme and Company can certainly cause!!!!
Dr. Mercola just put out a video and article about thyroid, and how under-diagnosed it is, and which tests to have done and do yourself. You can probably see this at his website. (I get his email newsletter)
The TSH test range of "normal" is exaggerated, he says, and so misses many, many people who have thyroid problems.
See also the recent posts about iodine.
Hope this helps!
Love,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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