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» LymeNet Flash » Questions and Discussion » Medical Questions » Starting over again...so upsetting

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Author Topic: Starting over again...so upsetting
tls122269
LymeNet Contributor
Member # 23200

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So I haven't posted here in a while. My daughter was diagnosed in Nov. 2009 w/Lyme, Bartonella and Rocky Mountain. She had many ups and downs, but we thought she was on the road to recovery.

She started college in Sept 2010 as a freshman and was almost entirely symptom free. Our dr. was very pleased with her progress. She wasn't on any medication whatsoever except for Zoloft for some anxiety due to the Bart.

Needless to say she went to college and life every other freshman she wasn't eating properly, sleeping enough and was doing plenty of partying. She started to have some symptoms again, but didn't tell me because they weren't that bad and she could live with them. As the months went on she started feeling crappier and crappier.

So here we are...she finished her last exam on Wednesday. She called me the week before to tell me that she hadn't been feeling well and it was getting progressively worse. She told me that she hadn't told me about the other symptoms because she didn't want to worry me....ugghhhh.

Let me also say that she had bloodwork done at college and her Sed rate was 11 in Nov. so that made me happy. Her Sed rate on Dec. 13 was 28, which was also around the time that she told me she was feeling bad again.

We were able to see her LLMD the day after she returned and her dr was not happy. Her lymph nodes were all swollen, her knees were swollen. They did some type of grip test on her right hand and it registered a 24, which prior it registered a 30...not quite sure if that is considered a drastic change. She is having jaw pain, wrist pain, knee pain. Also which she has never had before is she can't sleep for more than 4 hours at a time. She is absolutely exhausted but can't sleep.

So the dr took a whole new round of lab work and we are waiting for her results to come back. The dr thinks that the Lyme has come back. I'm not quite sure if I'm explaining it the right way, but she said that these things called "blebs" were hiding in her cells masking the symptoms and the they multiply every 24-28 days....which is the lyme. With the combination of my daughter not taking meds or taking care of herself that is why she is feeling this way.

This is her new course of treatment:
10 mg Flexeral (to help her sleep better)
50 mg Zoloft (anxiety)
Zithromax
Minocycline
Tindamax (10 days out of every month)

My daughter is just beside herself at this point. She thought she was rid of this stuff and here we are again. The dr explained that the Tindamax makes all of your symptoms intensify and she is not looking forward to that. Dr. also said it might be hard for her to go back to school for this semester if she is feeling so bad from the Tindamax since she is 6 hours from home and no one will be able to help her.

Anyway guess I'm just venting. I feel horrible for her.

Anyone have a thoughts or feeling to share. Thanks.

***edited out the dosages***

[ 12-19-2010, 03:36 PM: Message edited by: Lymetoo ]

Posts: 107 | From New Jersey | Registered: Nov 2009  |  IP: Logged | Report this post to a Moderator
nefferdun
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Member # 20157

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Nothing to add but offering my sympathy to both of you. I have been through the ups and downs of feeling nearly well and then getting sick again. Hopefully she will come out of it quickly.

Maybe something to hit the bart especially since she is anxious and not sleeping well.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Member # 743

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Yuck. That is so sad. Sounds like she may have stopped treating too soon. I do hope that the bartonella will be addressed.

I don't think that zith does anything for that .. and neither does mino. Tindamax will make her feel bad, though some patients just IMPROVE on it.

If she still has trouble sleeping, you may want to consider Ambien or trazodone.

hugs to both of you!! [group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96063 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561

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There s nothing worse than feeling ok and then relapsing big time. Hope it passes fast.

--------------------
He took u to it, He'll you through

Posts: 2837 | From NE. | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405

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Mino does work against lyme and bart..

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

Posts: 2027 | From British Columbia | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
glm1111
Frequent Contributor (5K+ posts)
Member # 16556

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PLEASE consider treating her for parasites/worms. This is often over looked and can cause anxiety and a bunch of other symptoms. Google parasite symptoms and do a search on here or parasites.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
we'll win
LymeNet Contributor
Member # 11112

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You have my sympathies. I have had Lyme for about twenty years and neurological Lyme for about 15 years.

I have been on many therapies, and in all forms, oral, intravenous, and intrumuscular (shots).

Look, I am not a doctor. But should your daughter be on a stronger antibiotic protocol? I don't want to start trouble between you and your daughter's Lyme doctor, but look at all the different, kind of heavy, and long term protocols other Lyme patients write about on this website.

On the other hand, your daughter improved greatly, so your Lyme doctor probably is doing a
great job and designed a very effective protocol.

Perhaps it was just a matter of getting off the protocol. I would rather not be the harbinger of bad news, but once you have chronic Lyme, staying on an antibiotic regimen (or perhaps combination antibiotic and maybe effective herbal regimen) might be required.

I stay on an an antibiotic regimen and would go downhill without being on one.

I completely sympathize and empathize with you and your daughter. We in the Lyme Community all support you and have gone through the ups and downs, like one of the posters above said. All the posts above have been really good.

Somehow you and your daughter need to keep smiling. She improved tremendously once and she can do it again.

We'll Win

Posts: 107 | From maryland | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
tls122269
LymeNet Contributor
Member # 23200

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We'll Win -

My daughter is only about 95 pounds and I think she wants to start her out slow. My daughter really likes her dr and I do as well. Hopefully she will react as she did before and we can get past this quickly. Thanks for your support and everyone.

Posts: 107 | From New Jersey | Registered: Nov 2009  |  IP: Logged | Report this post to a Moderator
   

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