Supplements? Weight gain? Where do I start??

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Ranza123
New Member


Date Joined May 2018
Total Posts : 3
   Posted 5/17/2018 2:40 PM (GMT -6)   
Hi guys! After a nearly year-long process of being turned away by doctors who dismissed my symptoms as just stress or hormones, I finally got a diagnosis last week of Lyme disease and have been on doxycycline the past 6 days. The Herxheimer reactions were awful (and my doctor, who was not well-versed in Lyme, had no idea what was going on), but I'm feeling better enough today to sit up and use the computer.

I'm hopeful that these antibiotics will rid my body of Lyme after my 21-day prescription, but I'm still faced with a number of symptoms that I don't anticipate will go away entirely, and neither my primary care doctor nor my endocrinologist seem willing to help/advise me.

My doctors don't know when exactly I got Lyme, but they estimate based on my activity/location it was between 1 and 3 years ago. In that time, I've gained close to 30 pounds. No amount of exercise or diet change has seemed to help. I haven't done any crazy diet changes (e.g. eliminating a food group entirely) because I've been in college this whole time and food choices are limited, but I started eating healthier overall and began exercising almost every day after class, and only continued to gain weight. I'm 21 years old, so I feel like it's too early for my metabolism to have crashed on its own, and my endocrinologist says all my metabolic functions are normal. I think there may be a thyroid issue as well, because hypothyroidism runs in my family. My free T4 and T3 levels are in the normal range, but my TSH increased from 3.5 to 4.6 in a period of 4 weeks. My endocrinologist barely glanced at the numbers and said that was fine, but it doesn't feel fine to me, and I know Lyme can affect the thyroid. But with no doctors prescribing anything for me, I'm not sure where to turn.

In a week, I move across the country after graduating from college, but I will probably have to wait two to three months before getting a new doctor while I wait for my new insurance to start. I will have them recheck my thyroid and check to make sure the Lyme was eradicated, but in the meantime, what should I do? Are there good supplements to help thyroid function and/or lose weight? I've also lost just about all muscle mass (I can barely lift a backpack), so I want to address that, too. I've also experienced considerable bloating/swelling (in the face/feet) and don't know if there are supplements to address that as well.

I'm still too fatigued to exert much energy, but in a couple weeks I start a very high-stress, time-consuming job, so I really need to be 120%. I feel pretty abandoned by my doctors, who basically took a "wait and see" approach and said they hoped the doxycycline would just fix everything. I'm willing to try just about anything to get back to my pre-Lyme self, so any advice/recommendations are appreciated!

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 337
   Posted 5/17/2018 2:59 PM (GMT -6)   
Pretty Sh**ty how many doctors behave that way? It really angers me how nonchalant and callous they can be with a patient in their office who says their life is falling apart because their body is failing. How about lets play the "wait-and-see" game when I decide whether or not to pay your bill smile.

Anyways,

I really do not want to be the bearer of bad news, but you should start mentally preparing yourself for the possibility that 6 weeks of Doxycycline may not "cure" you. I think most people suffering symptoms of TBD's (tick borne disease's) for over a year usually take 6 months or more of treatment to knock their symptoms into remission.

My personal experience was Doxycycline had little to no effect on my symptoms. It required about 6 months of other antibiotics to get my symptoms under control.

I think you would be wise to make an appt with a Lyme Literate MD.

Try not to stress about the new job. Your health is sooo much more important. Take care of yourself first.

Good luck! ask any questions you might have, and people here can help you find an LLMD if you are so inclined.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 5/17/2018 5:56 PM (GMT -6)   
Hi Ranza!

Unfortunately you will need many months of treatment after being sick for a year.
I'm sorry you have lyme...but glad you found us here. There's lots of support and knowledge on this forum.

Re: your thyroid:

"My free T4 and T3 levels are in the normal range, but my TSH increased from 3.5 to 4.6 in a period of 4 weeks."

When your TSH increased, what did your FT3 and FT4 numbers look like.
I hope it was the "Free" T3 and T4 that were measured?

Could you post your results with the respective ranges beside them? (from both tests)

A few weeks of doxycycline isn't sufficient to treat a year long infection.

You really should find a LLMD if you want the appropriate antibiotics and length of time needed.

We can help you find one:
Start a new thread: "Looking for LLMD in/near_____" and fill in the blank with your location.

You can also contact ILADS for a LLMD near you:

ilads.org/ilads_media/physician-referral/

I also have listings of LLMD"s...so you can also contact me via email and I'll see what I have for your area.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Ranza123
New Member


Date Joined May 2018
Total Posts : 3
   Posted 5/17/2018 8:47 PM (GMT -6)   
Thanks for the reply! For the thyroid, here were the first tests I had done and their reference ranges (doctor only ran TSH and free T4):

TSH: 3.55 ("standard range": 0.47 - 4.68)
Free T4: 0.9 ("standard range": 0.8 - 2.2)

Four weeks later I made them run the tests again, and asked them to include T3 (they did total T3, though, not free T3):

TSH: 4.6 ("standard range": 0.47 - 4.68)
Free T4: 1.3 ("standard range": 0.8 - 2.2)
Total T3: 140 ("standard range": 80-200)

I know there's no universally standardized range for TSH, but I know that lots of doctors use 3.0 or 3.5 as the max. Since neither my primary doctor nor my endocrinologist seem to be using that low of a range, it feels like there's nothing I can do on that front except wait until I get a new doctor.

As far as the Lyme, I was thinking about asking my primary doctor for another dose of the antibiotics at the end of these 21 days. The prescription ends right as I move away, so if my doctor won't give me a new prescription, I will have no access to medication for a while until I get a new doctor. I'm worried, though, that they won't give me another dose since they told me the recommended length was only 21 days.

I'm in a rural area right now, so there are no LLMDs, but I'm moving to Chicago so hopefully I'll have access to a whole new set of doctors and specialists. Unfortunately, I will not have the time/money/insurance to see a doctor until August, which is why I have been trying my best to get my health as squared away as possible before I leave here.

Girlie said...
Hi Ranza!

Unfortunately you will need many months of treatment after being sick for a year.
I'm sorry you have lyme...but glad you found us here. There's lots of support and knowledge on this forum.

Re: your thyroid:

"My free T4 and T3 levels are in the normal range, but my TSH increased from 3.5 to 4.6 in a period of 4 weeks."

When your TSH increased, what did your FT3 and FT4 numbers look like.
I hope it was the "Free" T3 and T4 that were measured?

Could you post your results with the respective ranges beside them? (from both tests)

A few weeks of doxycycline isn't sufficient to treat a year long infection.

You really should find a LLMD if you want the appropriate antibiotics and length of time needed.

We can help you find one:
Start a new thread: "Looking for LLMD in/near_____" and fill in the blank with your location.

You can also contact ILADS for a LLMD near you:

ilads.org/ilads_media/physician-referral/

I also have listings of LLMD"s...so you can also contact me via email and I'll see what I have for your area.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 5/19/2018 12:33 AM (GMT -6)   
TSH: 3.55 ("standard range": 0.47 - 4.68)
Free T4: 0.9 ("standard range": 0.8 - 2.2)

Four weeks later I made them run the tests again, and asked them to include T3 (they did total T3, though, not free T3):

TSH: 4.6 ("standard range": 0.47 - 4.68)
Free T4: 1.3 ("standard range": 0.8 - 2.2)
Total T3: 140 ("standard range": 80-200)


So you really need to see the FT3 - that is an important piece of information.
Even if the FT4 is in range - it needs to be converted to FT3. (And your FT4 is on the low side anyway)

Your TSH isn't out of range...but it's close at 4.6

Unfortunately, you need a Dr. who is willing to do the right tests (FT3 and also antibody testing).

Is there another endocrinologist you can see?

Here's a website that me be helpful:

/stopthethyroidmadness.com/how-to-find-a-good-doc/
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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