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Hormone levels

Messages
67
Location
NYC
My hormone panel just came back showing low levels of LH, FSH, estradiol and progesterone, and high levels of DHEA-S. I was wondering if anyone here has seen similar results or has any insight about this. Perhaps the problem lies in the hypothalamus/pituitary? Do the results look really bad? (I'm 25..)

LH: <0.2 mIU/mL (range 1.9-12.5)
FSH: 1.0 mIU/mL (range 2.5-10.2)
Prolactin: 23.0 ng/mL (range 3.0-30.0)
Estradiol: <15 pg/mL (range 19-144)
DHEA Sulfate: 336 mcg/dL (range 45-320)
Progesterone: 0.2 ng/mL (range < or = 2.7)
17-OH-Progesterone: 19 (range < or = 185)
Testosterone, total: 15 ng/dL (range 2-45)
Testosterone, free: 1.8 (range 0.1-6.4)

Thanks...
Karina
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
What day in your cycle did you do the testing?

Your prolactin is pretty high which would seem to rule out a pituitary problem. However, you are correct that a low LH and FSH point to secondary ovarian failure which would be due to a problem with the pituitary or hypothalamus.

Have you tested thyroid ever? TSH is another pituitary hormone that is commonly measured.

Have you been diagnosed or testing for any autoimmune disorders?
 
Messages
67
Location
NYC
Hi Ema, thanks for your response...

I did the test on day 2 of my cycle (the reference ranges I included are for the follicular phase).

My TSH is 0.77 (ref 0.40-4.50).. I had pretty thorough thyroid testing a few months ago and the results were all normal. Cortisol was 9.8 mcg/dL (range 4.6-20.6).. a recent saliva test also showed low-normal cortisol throughout the day.

It doesn't look like I have any autoimmune disorders, either.

I wonder if these hormones (or lack thereof) might be responsible for this terrible anxiety/depression I've been experiencing lately.

Anyway thanks again...
Karina
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Hi Ema, thanks for your response...

I did the test on day 2 of my cycle (the reference ranges I included are for the follicular phase).

My TSH is 0.77 (ref 0.40-4.50).. I had pretty thorough thyroid testing a few months ago and the results were all normal. Cortisol was 9.8 mcg/dL (range 4.6-20.6).. a recent saliva test also showed low-normal cortisol throughout the day.

It doesn't look like I have any autoimmune disorders, either.

I wonder if these hormones (or lack thereof) might be responsible for this terrible anxiety/depression I've been experiencing lately.

Anyway thanks again...
Karina

FSH and LH are best tested early in the cycle as you did but to get a full picture of your hormone status, I would consider testing estrogen and progesterone on day 21 as well. Those hormones are typically low at day 2 and the levels may be perfectly normal for you. The second testing will round out the picture of your hormone levels across the month and would be very worthwhile in my opinion.

I would also consider re-testing the prolactin in a month or two. It's not overtly high (and many things including a needle stick can elevate prolactin) but it's on the borderline for warranting further investigation in my non-medical opinion.

An AM cortisol of 9.8 is dreadful. It should be up near the top of the range in a healthy person. That is probably the cause of your anxiety and depression along with the almost always concurrent subclinical hypothyroidisim due to conversion problems. Do you have low cortisol symptoms? Below 6 is diagnostic on its own of primary Addison's disease. With your level, did anyone recommend an ACTH stim test?

Do you have your saliva cortisol test results to post? What were the suggestion to you based on the low/normal results? Are you taking any steps to address this?

I would also hazard a guess that you may have iron/anemia issues - have you had a full serum iron panel including TIBC/UIBC and % sat? Ferritin?

There is a big difference between normal and optimal in terms of thyroid labs. TSH is not the best indicator of thyroid status. It is also important to test FT4 and FT3 along with RT3 to determine that conversion is occurring from the storage hormone T4 to the active hormone T3. It would be very rare for you to not have subclinical hypothyroid problems with the cortisol results posted. Depression and anxiety would be common symptoms here as well - a double whammy with low cortisol.

Did you have thyroid antibody tests done to rule in/out Hashimotos?

Have you been evaluated for Lyme, EBV or other infectious diseases that dysregulate the HPA/HPO axis?

I know this is more than you asked for in looking at your sex hormone labs but I think that those low levels are probably not the underlying cause of your symptoms. It may be that further investigation is necessary. I've been down this path myself and am happy to answer any questions you may have.
 
Messages
67
Location
NYC
Hi Ema, wow, thanks for your insights. I have elevated EBV and HHV-6 titers, and it looks like I most likely have Lyme Disease. I guess those could easily be the 'underlying causes' of the HPA/O axis dysfunction... :-/

I'm attaching my two saliva cortisol tests- the first from February, the second from May. In March/April I began taking some adrenal supplements ("Adrenal Rebuilder"), rhodiola rosea, some other stuff, and I started the methylation protocol. Maybe those contributed to the improved results...

Here are some thyroid results from January:
Free T4: 1.21 ng/dL (ref 0.82-1.77)
Free T3: 3.2 pg/mL (ref 2.0-4.4)
Looks ok, doesn't it? I also had thyroid antibody tests and they were negative.

My last iron panel was done in November:
TIBC: 316 ug/dL (ref 250-450)
UIBC: 233 ug/dL (ref 150-375)
Iron, Serum: 83 ug/dL (ref 35-155)
Iron Saturation: 26% (ref 15-55)
Ferritin, Serum: 45 ng/mL (ref 13-150)
Those seem to be ok. Although a lot could have changed in 8 months, I suppose.

I had the sex hormones tested because a few months ago I suddenly developed signs of PCOS (irregular periods, hair growth, etc). That actually coincided with a major relapse (Lyme?)... Hopefully this will get figured out one day.. :-/ I wonder what the doc(s) will suggest based on these results.

Thanks again for your help!

Karina

PS: Any idea why the DHEA-S would be high? Also, what would elevated prolactin suggest?
 

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Ema

Senior Member
Messages
4,729
Location
Midwest USA
Hi Ema, wow, thanks for your insights. I have elevated EBV and HHV-6 titers, and it looks like I most likely have Lyme Disease. I guess those could easily be the 'underlying causes' of the HPA/O axis dysfunction... :-/

Yes, absolutely. Lyme in particular is known for dyregulating the endocrine system.

When you say most likely you have Lyme, what do you mean in particular?

I'm attaching my two saliva cortisol tests- the first from February, the second from May. In March/April I began taking some adrenal supplements ("Adrenal Rebuilder"), rhodiola rosea, some other stuff, and I started the methylation protocol. Maybe those contributed to the improved results...

The results actually look pretty similar to me. Both sets are too low in the morning and midday and then too high at night. Are you having trouble sleeping? I suspect yes, given the time stamp of 255AM!

I think that boosting the levels in the AM with Isocort or HC might be something to consider. If your doctor is running these panels, hopefully s/he is up on treatment beyond adrenal supplements. I think there is a place for rhodiola etc but your below range morning levels may need more help especially if Lyme and other infections are involved. These will cause you to burn through cortisol like nobody's business.

The methylation protocol definitely has the potential to improve the endocrine system as well.

Here are some thyroid results from January:
Free T4: 1.21 ng/dL (ref 0.82-1.77)
Free T3: 3.2 pg/mL (ref 2.0-4.4)
Looks ok, doesn't it? I also had thyroid antibody tests and they were negative.

They could be a smidge higher (most people feel best with FT4 about 1.4 and FT3 at the top third of the range) but don't look too bad at all. I wonder what they look like now? Also, I wonder what your RT3 would look like?

That's great that your antibody tests were negative and that your doctor ran them. It sounds like you are working with someone who is at least somewhat on the ball.

My last iron panel was done in November:
TIBC: 316 ug/dL (ref 250-450)
UIBC: 233 ug/dL (ref 150-375)
Iron, Serum: 83 ug/dL (ref 35-155)
Iron Saturation: 26% (ref 15-55)
Ferritin, Serum: 45 ng/mL (ref 13-150)
Those seem to be ok. Although a lot could have changed in 8 months, I suppose.

Yes, they could definitely have changed. But again, they are a bit low but not dreadful. I personally shoot for serum iron of 100-110 and ferritin 70-90. Your TIBC is above the bottom of the range which indicates that you can safely supplement and store iron. It also doesn't look like you have anemia of chronic disease which is great. But I would consider trying iron bis-glycinate (which is a non-toxic form) to see if bumping those levels up a bit would help increase energy etc.

I had the sex hormones tested because a few months ago I suddenly developed signs of PCOS (irregular periods, hair growth, etc). That actually coincided with a major relapse (Lyme?)... Hopefully this will get figured out one day.. :-/ I wonder what the doc(s) will suggest based on these results.

In PCOS, often times the LH is higher than the FSH. So with that not being the case nor your testosterone being high, I would lean away from thinking PCOS.

What has helped me the most is treating from three fronts...I treat the endocrine abnormalities that I have with replacement hormones, support the balancing of the endocrine system with the methylation protocol and attack the infections directly with antivirals and antibiotics. I have seen quite a bit of improvement with this plan but it is taking time for sure!

If I were you, I would want to get an ACTH stim test - preferably the low dose version. Your low AM cortisol is worrisome to me still. If it is negative (as it may very well be because the stim test is not perfect and misses about half of those with secondary adrenal insufficiency), then at least you will know. And if you fail the stim, your treatment options will be significantly easier to get in terms of endocrinologists acknowledging your disease.

After the stim test, I would want to start on some sort of adrenal program, most likely involving the use of low dose hydrocortisone or Isocort and possibly trying some melatonin at night. I think the morning levels are beyond what you can reasonably expect an herbal formula to correct though something like rhodiola certainly won't hurt.

I would also get the Day 21 sex hormone labs to finish fleshing out that picture. If those are low, then I would consider supplementing with bioidentical hormones.

I would keep up with the methylation protocol.

And I would try to get on an appropriate protocol for lowering the infectious load in your body. I have had a lot of success with Nexavir personally but there are many threads about antivirals and antibiotics on the boards.

If you have Lyme, it is important to get on a good antibiotic profile that will attack all 3 forms the bacteria can take. For me, this takes the form of cefuroxime, azithromycin and Flagyl. I also am taking Famvir now for the viral infections.

I would finally also consider a stool analysis like the CDSA or the Organic Acids test from Metametrix to assess gut function. I would also think about incorporating a lot of probiotics into your regimen especially if antibiotics are to become a part of your course of treatment.

Hope that helps and is not too overwhelming. Your results are not dreadful but I definitely think that there is room for improvement and that you are on the right track!



PS: Any idea why the DHEA-S would be high? Also, what would elevated prolactin suggest?

It's not uncommon for DHEA-S to go high right before it starts to plummet in earlier stages of HPA axis dysregulation. I would guess that is what is happening here as your cortisol results are not completely flat-lined yet.

The elevated prolactin could really be nothing more than stress from the needle stick. I would not fuss about it unless it goes up (prolactinomas generally produce prolactin levels many many times above the top of the range) upon retest.

I will go back through my notes though and see if I have saved anything else on prolactin. If I find anything, I will add it to the thread.
 

richvank

Senior Member
Messages
2,732
Hi, Karina.

I think Ema has given you very good advice.

I agree that staying on the methylation protocol is likely to help you with these issues in the long run.

With regard to the ACTH stimulation test, this may come out normal, even though you have HPA axis dysfunction and abnormal cortisol and DHEA-S levels. The reason for this, according to the GD-MCB hypothesis, is that this test only measures the response of the adrenal glands to ACTH, which is normally secreted by the pituitary. In most (but not all) cases of ME/CFS, the adrenal glands themselves seem to be O.K. The problem is that the pituitary is not putting out ACTH properly. The reason is that glutathione is depleted in the pituitary and the hypothalamus in ME/CFS. Over time, the methylation protocol should correct this.

There is such a thing as the CRH stimulation test, but I don't think it's easy to get it approved or run. That test, in which the person is given CRH (which is normally produced by the hypothalamus to stimulate the pituitary to secrete ACTH), and both ACTH and cortisol levels are measured over time, will likely show the problem with ACTH secretion in ME/CFS.

I think the abnormal LH and FSH levels could also be caused by glutathione depletion in the pituitary.

I hope you will be able to get improvement in these hormone levels soon.

Best regards,

Rich
 

rlc

Senior Member
Messages
822
Hi VitaminK, if you haven’t already it would be wise to get referred an endocrinologist to as soon as possible to get them to look at your tests results, most of the conditions that cause test results like yours are endocrine diseases. There are many diseases that can cause the results you have.

Low LH is listed as being caused by these 44 conditions http://en.diagnosispro.com/differential_diagnosis-for/lh-leutinizing-hormone-lab-decreased/10435-153.html

Low FSH is listed as being caused by these 44 conditions http://en.diagnosispro.com/differential_diagnosis-for/fsh-follicle-stmulating-hormone-icsh-lab-decreased/11787-153.html

Low progesterone is listed as being caused by these 18 conditions http://en.diagnosispro.com/differential_diagnosis-for/progesterone-lab-decreased/10365-153.html

High DHEA-S is caused by these 13 conditions http://en.diagnosispro.com/differential_diagnosis-for/dehydroepiandrosterone-s-dheas-lab-increased/14103-154.html

information on low Estradiol can be found here http://labtestsonline.org/understanding/analytes/estrogen/tab/test

information on FSH can be found here http://labtestsonline.org/understanding/analytes/fsh/tab/test

information on LH can be found here http://www.labtestsonline.org.uk/understanding/analytes/lh/tab/test

information on progesterone can be found here http://labtestsonline.org/understanding/analytes/progesterone/tab/test

information on DHES-S can be found here http://labtestsonline.org/understanding/analytes/dheas/tab/test

So there are a lot of possibilities, but the most likely is some kind of Pituitary problem as all these kinds of results are caused by Pituitary diseases, this may also be leading to under functioning adrenal glands. Endocrinology is a very complicated specialty and the average doctor does not have this kind of knowledge, so I would recommend talking to your doctor and asking them to refer you to an Endo, so they can investigate you properly to find out what is really going on and give you a correct diagnosis and treatment

If you get a ACTH stimulation test ask about getting the low dose one, it has been shown to be far more accurate in diagnosing pituitary problems, see http://jcem.endojournals.org/content/83/8/2726.abstract

Hope this helps

All the best





 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Im not sure if one can at all go by testosterone results in diagnosing PCOS IF one ALSO has ME as what ME does, it appears it can shift things.

ME seems to be lowering testosterone levels in many of us (there has been many discussions on this form about low testosterone and ME/CFS). (is something using our testosterone up?)

I do have PCOS and have that diagnoses and must of"had" high testosterone in the past (I still get a lot of hair growth on my face due to my past high levels of it.once affeted in that way, abnormal hair growth will remain) but due to ME, now I have LOW testosterone to the point where my gyno at one point had me on testosterone replacement (thou I still do have PCOS!!).

High androgen levels eg high DHEA , can indicate PCOS. According to the following article 70% of PCOS cases have high DHEA http://www.livestrong.com/article/432142-the-high-levels-of-dhea-in-pcos/ (I myself dont).

Another indication of it as ema stated, can be reversed LH/FSH ratios. I got told mine are reversed. Unlike your result, my LH is higher and in reversed ratio to my FSH, which was one of the indications my doctor sent me for a ultrasound for PCOS as that indicated it so hence she thought I had PCOS just from that..before a ultrasound confirmed it.

PCOS can cause low progesterone.

Anyway.. I just wanted to point out to everyone that the ME can screw our hormones up so much, that it may cause unusual results for other hormonal issues we have and may make things even harder to diagnose, due to we may not fit the normal picture of how things usually present. and ME may hide PCOS some by altering the normally high testosterone result and bringing it to a normal or even to low level like its done to myself.

IF your periods are missing, irregular or you have abnormally long cycles. I suggest you to ask a doctor for a ultrasound on your ovaries and see if they show up PCOS there as you do have some PCOS abnormality things going on. (I personally wouldnt bother about an ultrasound or worrying that you could have PCOS, unless you do have periods such as I stated above).

If someone does have PCOS, it can be important to know as it may lead to insulin resistance (which I have) and diabetes. So things like that need to be kept an eye on. (You didnt say enough for me to think that PCOS is probably your case, its probably something else messing up things).
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I need to go back to a hormone and cortisol test I took in 2008 but I think all th hormones were low. Dr tried me on synthetic hormones that I reacted badly to, then she tried Bioident hormones but I could not hndle that either. So no homronese t help w menopause
 
Messages
67
Location
NYC
hi guys,

thanks so much for your amazing comments and advice! i meant to respond earlier, but i had a nightmare of a week, filled with brain fog, panic, vertigo, fatigue, and other nice things.

*ema,
my doctor isn't 100% sure that i have lyme disease, but i had +igm 23 and 39 on the western blot, and a brain spect scan showing (moderate) global cortical hypoperfusion in a heterogeneous pattern- typical of lyme. my frequent episodes of encephalopathy also point strongly to lyme disease. i've been on doxycycline for 4 months, plaquenil for 2 months, and valtrex for 2 weeks. i had a brief appointment with my doctor on friday, and he wants me to start iv antibiotics. he didn't have much to say regarding the hormone results but will speak to my gyno when i see her in a week. so we'll see what she has to say. she wants to repeat the day 2 hormone panel.. i asked about the day 21 hormone test but she doesn't want to run that for some reason.

looks like our treatment plans are similar, except for the hormone stuff, which i'll hopefully address within the next few weeks. as for iron.. i have problems taking mineral supplements- they usually make my symptoms a lot worse. possibly by feeding various bacteria/biofilms?

you're right about the sleep schedule- well, it's not that i can't fall asleep, just that i feel better at night and like to take advantage of that ;)

can i ask- how long have you been treating the lyme? which tests were positive for you?

*rich,
thanks so much. i plan on continuing the methylation protocol and will probably repeat the methylation panel sometime soon. (btw, my doc told me that it's actually still not possible to run the methylation panel in new york...)
maybe i should do the (low-dose) acth test, but i suspect that the results will be normal. and if the problem lies higher up in the hypothalamus/pituitary, well, it would be interesting to know, but there wouldn't be much to do about that. beside the methylation protocol and treating the underlying infection(s) i guess...

*rlc,
thanks for the all the links and info! i suspect that my obgyn will refer me to an endocrinologist if she can't figure out exactly what's going on...

*taniaaust,
thanks. i guess the situation is even more complicated that i had supposed. well, i have some symptoms of pcos (hair growth, irregular and abnormally long cycles), a recent ultrasound showed cysts on my ovaries, and then these messed up hormone results...
i still suspect that lyme and other infections are responsible for these problems, though, and once those are treated, the hormones will normalize. is that naive? :) i have no insulin/blood sugar problems (yet)...

thanks again guys.. i know i started this thread to be about hormones, but it looks like i will be focusing on lyme stuff for now.. i'm quite scared to start iv antibiotics, to be honest.. but i should start another thread for that ;) anyway, i'll update this thread when i see my gyno...

best,
karina
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
*ema,
my doctor isn't 100% sure that i have lyme disease, but i had +igm 23 and 39 on the western blot, and a brain spect scan showing (moderate) global cortical hypoperfusion in a heterogeneous pattern- typical of lyme.

Both of those bands are specific for Bb, so it sounds like along with your clinical symptoms, the diagnosis fits.


i've been on doxycycline for 4 months, plaquenil for 2 months, and valtrex for 2 weeks. i had a brief appointment with my doctor on friday, and he wants me to start iv antibiotics.

Have you talked to your LLMD about getting on multiple antibiotics first? Doxy can work well for the spirochete form but you really need to be taking something for the other two forms as well. Plaquenil can help because it is an anti-inflammatory but my understanding is that it works by changing the pH of the cell which helps macrolide antibiotics (like azithromax) work better. But I'm not sure how that would work if you are not taking a macrolide antibiotic already.

I did not start seeing improvement for about 4 months on the triple cocktail of antibiotics.

Valtrex may not be the best option for an antiviral treatment though some people have reported progress with it. It isn't thought to have much activity against either HHV-6 or EBV. I would think about considering either Famvir or Valcyte though the latter is certainly a strong antiviral and requires monitoring. Dr Lerner's website has some good information about antiviral treatment that you may wish to look up.

If it were me, I would ask your LLMD about adding in the additional antibiotics. I would think about at least a six month trial of a full antibiotic protocol before switching over to IV but that is just my personal opinion.

she wants to repeat the day 2 hormone panel.. i asked about the day 21 hormone test but she doesn't want to run that for some reason.

This doesn't make much sense to me. You really need that day 21 test in my opinion to make any sort of meaningful interpretation of your sex hormone results. If you get another lab order, you can keep it and test on whatever day YOU choose based on the information you seek. They won't question you at the lab about your menstrual cycle and you can always plead "ignorance" with the doctor if need be (even though you are the one getting the right testing!).

It sounds like there are some holes in the treatment that you are getting. This isn't a deal breaker though as it sounds like you have doctors that you can work with for the most part. You will just have to stay on top of everything and research and check all treatments and meds yourself to make sure you are getting the treatment plan that you desire. This is actually a good plan for everyone no matter how good or knowledgeable the doctor - ultimately, it is your body and your responsibility.

i have problems taking mineral supplements- they usually make my symptoms a lot worse. possibly by feeding various bacteria/biofilms?

It could be. It's a fine line between starving your own body and metabolic processes and feeding bacteria/biofilms. My doctor and I tend to err on the side of feeding a few bacteria (that we will then kill with the antibiotics and biofilm busters) rather than letting the body suffer without the minerals needed. Hopefully, as antibiotic treatment progresses, you will be able to better tolerate the minerals without exacerbating your symptoms. I would keep trying different forms if I were you.

you're right about the sleep schedule- well, it's not that i can't fall asleep, just that i feel better at night and like to take advantage of that ;)

If the problem is in the hypothalamus, a more regular sleep schedule may help you. I understand how difficult this is as well but the hormones all have a circadian rhythm. You may find that staying up all night limits your production of hormones like melatonin and growth hormone and keeps you off balance in cortisol all day. It may be shooting yourself in the foot as far as your long term goals even though it feels better on a day to day basis. This is a really common struggle for those of us with endocrine abnormalities.

can i ask- how long have you been treating the lyme? which tests were positive for you?

I had positive and indeterminate bands on the Igenex test and an overwhelmingly positive test on the Neuroscience Lyme Immune ID test which measures the T cell response to Bb. I started treatment last September.

maybe i should do the (low-dose) acth test, but i suspect that the results will be normal. and if the problem lies higher up in the hypothalamus/pituitary, well, it would be interesting to know, but there wouldn't be much to do about that.

I can't tell you how many times I have heard people lament and regret not doing an ACTH stim test before they started treatment with steroids for adrenal problems. In many cases, it will be "normal" even when there is significant HPA axis dysregulation (as Rich explained so well) but once on any sort of treatment, it becomes impossible to test because of the feedback mechanism. There is no better time in my opinion to rule this out than right now because with your saliva cortisol results, I would want to start on some adrenal support as soon as possible.

obgyn will refer me to an endocrinologist if she can't figure out exactly what's going on...

I wouldn't count on much help with sex hormones from an endocrinologist. Despite supposedly being their field of expertise, I have yet to meet one (and I've met plenty) that knows anything about BHRT. Most will try to put you on synthetics and then only if you are not menstruating at all. Worse than doing nothing in my opinion...
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
...

If it were me, I would ask your LLMD about adding in the additional antibiotics. I would think about at least a six month trial of a full antibiotic protocol before switching over to IV but that is just my personal opinion....

Hi Ema,

Just interested in why you feel that a full dose, antibiotic protocol is good to complete before switching over to IV antibiotics? I am not treating Lyme myself, but know others who are who would welcome your input.

Thanks.

Sushi
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Hi Ema,

Just interested in why you feel that a full dose, antibiotic protocol is good to complete before switching over to IV antibiotics? I am not treating Lyme myself, but know others who are who would welcome your input.

Thanks.

Sushi

I'm just not convinced that you can call the treatment with oral antibiotics a failure without treating all three forms the bacteria can take. Many people need multiple antibiotic treatment for 6-24+ months to get results because Lyme can be so tricky to eradicate.

There just isn't a lot of evidence that IV antibiotics work significantly better than orals though they do seem to help some.
And given the risks of IV antibiotics (well worth it if necessary but risks nonetheless) and a PICC line etc etc, I would want to be sure that the orals weren't working before embarking down the IV path. Treatment may still fail even with IV antibiotics if only one form of the bacteria is addressed so that is something to consider as well.
 
Messages
67
Location
NYC
hi ema,

thanks again for your suggestions. i asked my doctor about trying other antibiotics, but he doesn't think that there's another oral protocol that will help me. he did refer me to another lyme specialist, though- my appointment is on monday.

my doctor has actually had a number of lyme patients who've shown no improvement on oral antibiotics, but dramatic improvements/recoveries with i.v...

i've also heard that valtrex isn't (very) effective against ebv/hhv-6, but perhaps it's a good antiviral to start with. i seem to be tolerating it so maybe i can try famvir or valcyte in the future, if necessary.

my appointment with the gyno is also next week so i'll talk to her about hormone testing.

i've had me/cfs for over 7 years. but the truth is, i think it's been lyme disease all along. and i'm hoping that a few months of i.v. antibiotics will get this crap out of my system and i'll recover...

gotta run- thanks again- i'll update soon.
karina
 
Messages
67
Location
NYC
hi, just wanted to update quickly. i saw the gynecologist yesterday. she said that i'm not "fitting neatly into a category" (ha). i may have pcos, she said, or i may have "hypothalamic amenorrhea".. or both. she actually suggested getting (another) brain mri, to rule out some kind of tumor i guess.

i mentioned cfs and lyme disease and she said that those certainly could contribute (or cause?) these problems i've been having. i mentioned the day 21 hormone test again but she didn't want to run that- i'll be repeating the day 2/3/4 test in a few weeks though.

in the meantime.. looking forward to my appointment with the lyme doc on tues :)

karina