New Here - Lyme Disease/Low T

Thread starter #1
55 year old male, struggling with symptoms from long term lyme disease. Brain fog, muscle fatigue, body aches, exercise intolerance for several years now. Summer had blood test for T levels. Came back total T=176. Doc sent me to urologist, he put me on gel, 2 months later total T=325 (no change in symptoms). Then self injection .5ml CYP weekly 200mg/ml. 2 months later total T=385 (no change in symptoms). Now dose change to 2ml CYP weekly 1000mg/10ml. Its been 2 weeks and no change in symptoms. Libido no different than starting (pretty low).

I am getting very frustrated now. I understand that my lyme symptoms may not all be from low T levels but surely there has to be some correlation. Do I just need to be patient? I would have expected to experience something with the higher dosing.
 
#3
Doses are always expressed in milligrams, since an expression in ml is a volume. That said, you are taking 400mg of testosterone per week - 2ml with 200mg/ml? Am I right? That's not testosterone replacement therapy, that's an anabolic cycling dose. You have almost certainly sent your estradiol through the roof, may be flirting with hematocrit and hemoglobin problems...it makes no sense.

What are your other lab results? Your free testosterone...your SHBG, estradiol/sensitive (LC, MS/MS)? Was your thyroid evaluated before therapy started?

Your post suggests a lot of reckless changes, please help us understand where things stood before therapy began and what you're now doing.
 
#5
Welcome to EM,

Lots of guys expect immediate results and don't understand why symptom relief doesn't happen once a guy gets his testosterone levels to a healthy level, you must understand that for you to start feeling good again tissues must be repair in order for you to start feeling normal again. Libido and erections will not happen until you start getting restful deep stage 4 REM sleep.

SHBG labs are essential for evaluating how often you should be injecting per week, if SHBG is low once weekly injections will not work as I have learned myself. Lots of guys that end up here often don't have the proper labs run before one begins TRT and this almost always sets you up for failure, please share your labs and I'm certain we will find something your doctor missed. Guys who get knowledgeable hormone specialists usually never grace these forums, only guys who get inexperienced doctors end up here.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3188848/

Effects on sexual interest appear after 3 weeks plateauing at 6 weeks, with no further increments expected beyond. Changes in erections/ejaculations may require up to 6 months. Effects on quality of life manifest within 3–4 weeks, but maximum benefits take longer. Effects on depressive mood become detectable after 3–6 weeks with a maximum after 18–30 weeks. Effects on erythropoiesis are evident at 3 months, peaking at 9–12 months. Prostate-specific antigen and volume rise, marginally, plateauing at 12 months; further increase should be related to aging rather than therapy. Effects on lipids appear after 4 weeks, maximal after 6–12 months. Insulin sensitivity may improve within few days, but effects on glycemic control become evident only after 3–12 months. Changes in fat mass, lean body mass, and muscle strength occur within 12–16 weeks, stabilize at 6–12 months, but can marginally continue over years. Effects on inflammation occur within 3–12 weeks. Effects on bone are detectable already after 6 months while continuing at least for 3 years.
 
#6
I am so thankful I found this site! You guys are awesome thanks for taking the time to help people out. If my multi qoute doesnt work:

You THREE POSTERS: Coaster, Israel, and Lord
 
#7
Welcome to EM,

Lots of guys expect immediate results and don't understand why symptom relief doesn't happen once a guy gets his testosterone levels to a healthy level, you must understand that for you to start feeling good again tissues must be repair in order for you to start feeling normal again. Libido and erections will not happen until you start getting restful deep stage 4 REM sleep.

SHBG labs are essential for evaluating how often you should be injecting per week, if SHBG is low once weekly injections will not work as I have learned myself. Lots of guys that end up here often don't have the proper labs run before one begins TRT and this almost always sets you up for failure, please share your labs and I'm certain we will find something your doctor missed. Guys who get knowledgeable hormone specialists usually never grace these forums, only guys who get inexperienced doctors end up here.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3188848/
I can't emphasize how important the points Systemlord raises are. He's absolutely right about the need for nuance and patience in the world of androgen replacement, and how the restoration of normal testosterone levels - in and of itself - is one piece of a much larger health mosaic.

The study he quotes is of interest, but one should not rely on its conclusions uncritically. There is every reason to believe that estradiol levels, to the extent they were monitored, were evaluated with the standard lab test: a totally unreliable vehicle for measuring estradiol in men. The uncompromising statements the authors make about the restoration of libido and ED have been shown to be far too pessimistic. For example, one should not lose hope if sexual interest hasn't improve in six weeks, as this study flatly claims. We now know that the road to TRT success is measured in longer timelines.

Which brings us back to larger point. Be patient.
 
Thread starter #8
Thanks for your reply and patience with me. My dose was adjusted 2 weeks ago from 100mg/week to 200mg/week.

Blood work ordered by my primary, done in Aug. 2017, results total T=176, Free=36.4. He sent me to a urologist and he ordered blood work also done in Aug. 2017. Prolactin, serum 13.3, LHS 3.28, FSH=3.28, cortisol=18.45.

Now 6 months later total T=389 Free=67.6. Just got result for Enhanced Estradiol=56.7. I need to check this week with Dr. to see if he is going to add an estrogen blocker.

Thyroid has always been in the normal range at 1.69. I should say that my doc has been a bit concerned with my PSA as it jumped from 2.5 to 3.5 in one year (before any trt) and my latest number after starting trt is 4.0.
 
Thread starter #9
I live in NH. Work outside been exposed to lots of tics. On my second Dr. now, took me a year to get an appointment. Been 2 years of treatment with little improvement. Did lots of heavy duty combos of antibiotic treatment. Tried tons of holistics.
I think the lyme has messed with my hormone levels, I was so sure that my low T was a big part of my symptoms, but so far after 6 months, no improvement. Need to decide how far to chase trt treatment before considering going back on antibiotics or some other treatment.
 
#10
Did your doctor discuss smaller, multiple injections per week? Unless your SHBG is extremely high you are likely to experience success with a protocol calling for less testosterone, more often, as opposed to single, whopping doses. You chances of managing estradiol spikes without an AI are far greater on such a protocol. Where does your SHBG sit? That's key to designing a protocol.

PSA of 4.0 is a red light for a patient on TRT...it needs to be thoroughly evaluated.

Thyroid issues are not resolved with the TSH values alone. It would be valuable to know where your ft3, ft4, rt3 and both antibody sit.

What is your sleep like? Any chance you are dealing with apnea? There are dramatic numbers of men with undiagnosed apnea - which hammers your hormones.

Finally, your not well served by the approach your doctor has chosen. That's not unusual; most of us had to work to find capable medical care.
 
#11
I live in NH. Work outside been exposed to lots of tics. On my second Dr. now, took me a year to get an appointment. Been 2 years of treatment with little improvement. Did lots of heavy duty combos of antibiotic treatment. Tried tons of holistics.
I think the lyme has messed with my hormone levels, I was so sure that my low T was a big part of my symptoms, but so far after 6 months, no improvement. Need to decide how far to chase trt treatment before considering going back on antibiotics or some other treatment.
Holistic does not work.
I have a Daughter that is just now feeling better. I need to do an update on the 2 post to bring it current.
She was on antibiotics for a year.
Found a DR in Mobile that understands Lyme and he was the one that took care of her after she spent $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$ on quacks in the Atlanta area (to include Holistic Quacks).
PM me if you would like the contact info for the DR. He only works 1/2 time as he is 1/2 retired:)
So you did not state but you were / are positive on the western blot?
https://www.excelmale.com/showthread.php?11954&p=82110#post82110
https://www.excelmale.com/showthread.php?6400&p=34722#post34722
 
Thread starter #12
My doctor did not discuss multiple injections per week, he initially wanted me to inject every 2 weeks, but as I learned here, that is not best. I guess I am not clear on SHBG, is that one test? My doctor did not order that one. I don't sleep well because most nights I have body aches, and my arms tingle. I wake up many times during the night. Feel like I got hit by a truck most mornings. Have quite a bit of muscle fatigue during the day. Sometimes my biceps feel like I have been constantly lifting weights, then lots of fatigue. Along with brain fog, I have learned that these are common lyme symptoms. Seem to be too severe for just low T?
 
#13
You have two, complex medical conditions requiring attention - hypogonadism and Lyme. You aren't receiving proper care, you had an inadequate workup for your testosterone issues, SHBG is an essential test. It is a key factor in designing your protocol: your injection schedule and the amount of testosterone per injection is dependent on where SHBG sits. As was noted before, you are on a dose in excess of what almost all TRT patients inject. If your SHBG is low(er) it is working against you.

Orrin Israel has posted many times on Lyme issues. You'd do well to engage with him.
 
#15
ok, thanks for that advice. Would you suggest that I should be seeing an endocrinologist and not a urologist?
There as many, perhaps more, incompetent endocrinologists as there are ill-informed urologists. The sad truth? There are very few doctors who know how to play this game. Very little time is devoted to male androgen issues in medical school/residency. It doesn't matter the specialty designation, emdocrinologist, urologist, internist, family-practice, only some of them will be able to help you (my doctor, here in Canada, is certified in family practice, as are Drs. Saya and Crisler, leading figures in this field).

Are you in a position you can seek treatment outside your insurance network? If that is possible, we can refer you to national practitioners (who may not be as expensive as you fear).

We we have to become our own advocates. Read all you can her on the Forum, particularly the "sticky posts." Ask questions.
 
Thread starter #16
Kind of the same thing in the lyme world. Most doctors have no clue what to do with someone who is having lyme symptoms where a few days of doxy doesn't help. They refer you to all kinds of specialist who have no clue either. My current "lyme literate" dr. is one of the few around here that treats with heavy doses of antibiotics. He has a solid reputation and has treated many hundreds, maybe thousands of patients. I had to quit the antibiotics after 6 months because it seemed to cause a spike in my tinnitus (ear ringing).

Anyway, before I make a final judgment to continue trt, I wanted my levels to be in the upper range of normal to see if there was any difference in symptoms.

Everything on my insurance is subject to a $6700 deductible. So this has been an expensive journey so far.
 
#17
Hello,
I've been down the Lyme disease route. I had an excellent Lyme Dr.
900mg of antibiotics a day for 2 years with additional supplements.
Cured!
Ranger100
 
Thread starter #18
Are you also being treated for low t? If so, would you say that was caused by the lyme or a separate issue? So far 6 months of TRT treatment has not helped me with my lyme symptoms if fact seems to be contributing to some ED issues that I didn't have before. I can't tolerate the antibiotics, makes my tinnitus worse
 
#20
I had/have Lyme. First positive test n 1998. I had intermittent fatigue,anxiety,and some pain but not to bad. My hormones seemed fine had a normal life until 2007 I crash dieted and over trained and that's when my hormones took a shit. I've never fully recovered from that. But my biggest hurdle seemed to be low cortisol. Have you checked your am cortisol levels

i was with one of the best trt drs around but I have a very uncommon reaction to being on trt. Anxiety goes through the roof. I haven't suffered from anxiety since my early 20s (35 now) but for some reason despite perfect numbers across the board can't get rid of the anxiety on trt. Trt did help with my pain levels but caused some of my old symptoms to come back like muscle twitching and tinnitus. So I'm currently on a clomid restart. I went cold turkey first for about a month and I stared crashing hopefully clomid picks me up and I can get back to my natural low normal levels. I was doing fine before trt just wanted to get to the next level. But doesn't seem like it's the answer for me personally
 
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