Update to my Update and Continued Frustration - Ugh

WellPreserved
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I posted awhile ago about issues my 26 year old daughter was having with her joints. https://www.momconfessions.net/viewtopic.php?t=41792

Well, she was referred to a rheumatologist who then refused to see her as her blood "levels" weren't high enough to be of a concern BUT they said test again in 3 months. So my daughter's doctor tested again for Lyme and the testing indicated elevated platelet count so her doctor referred my daughter to a hematologist. Kinda super scary having your daughter referred to "The Cancer Center" for further testing and evaluation. After two weeks on the phone trying to schedule an appointment, hematologist said that her platelet count wasn't high enough to warrant further testing so deferred a visit until after blood work in July! In the meantime, my daughter's primary still thinks it's Lyme but can't prescribe doxycycline without a positive Lyme test. Our vet thinks it's Alpha Gal (another tick borne illness) and has offered to give my daughter doxycycline but she would have to take off work and get off steroids (which she's now been on since February) in order to see if it's working. Also, it's our VET.

I am so beyond frustrated and angry with the entire medical system. Guarantee, this would NOT happen in another country and I know this from living in and having illnesses in other countries. If this isn't resolved in the next two weeks, I'm taking my daughter to Duke and not leaving until we have a diagnosis and I don't care what the cost is but it is pretty F***ing unacceptable that it would have to come to that in order to get appropriate care.

Just to add, my daughter is fortunate in that she has a super understanding boss and has no real bills to pay so taking time off work to deal with this (and it's been a shit ton of time) has not really affected her financially. MOST people do not have that luxury.

There's my rant for the day!
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Slimshandy
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I am really sorry she’s going through all this.

If it is alpha-gal, can she try going without meat for a while to see if her symptoms get better?
SallyMae
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Good luck getting it all sorted out. Best wishes to her.
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Slimshandy wrote: Tue Apr 02, 2024 7:29 pm I am really sorry she’s going through all this.

If it is alpha-gal, can she try going without meat for a while to see if her symptoms get better?
Fortunately, or unfortunately, alpha gal doesn't always present as a reaction to mammalian meat. According to my vet, it can sometimes present as inflammation of joints. She's a pretty strict vegetarian so eliminating meat is not a question but that doesn't seem to make a difference, at least in her case.

Thank you for your concern and suggestion though! I'm ready to try leaching so all suggestions are welcome😅
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WellPreserved wrote: Tue Apr 02, 2024 7:46 pm
Slimshandy wrote: Tue Apr 02, 2024 7:29 pm I am really sorry she’s going through all this.

If it is alpha-gal, can she try going without meat for a while to see if her symptoms get better?
Fortunately, or unfortunately, alpha gal doesn't always present as a reaction to mammalian meat. According to my vet, it can sometimes present as inflammation of joints. She's a pretty strict vegetarian so eliminating meat is not a question but that doesn't seem to make a difference, at least in her case.

Thank you for your concern and suggestion though! I'm ready to try leaching so all suggestions are welcome😅
I’m sorry. I’m just going off of what a family friend had to do to improve his symptoms, so I’m not at all knowledgeable on it.
I’m hoping she gets some answers soon.
SallyMae
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WellPreserved wrote: Tue Apr 02, 2024 7:46 pm
Slimshandy wrote: Tue Apr 02, 2024 7:29 pm I am really sorry she’s going through all this.

If it is alpha-gal, can she try going without meat for a while to see if her symptoms get better?
Fortunately, or unfortunately, alpha gal doesn't always present as a reaction to mammalian meat. According to my vet, it can sometimes present as inflammation of joints. She's a pretty strict vegetarian so eliminating meat is not a question but that doesn't seem to make a difference, at least in her case.

Thank you for your concern and suggestion though! I'm ready to try leaching so all suggestions are welcome😅
In that case, let me reiterate my suggestion from the other thread, and recommend occasional tendon. It can be hard for Americans, especially vegetarians, to get enough connective tissue in their diet. I'm a vegetarian and I can't eat red meat at all, but tendon does not bother me and I make an exception for it because it really helps my joints. Just something to mull over!
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I’m sorry this is happening.I think I mentioned Lymes in the other thread.

My friend had symptoms that were all over the place. Her primary put her on doxi. Her labs were not indicative of Lymes , but she was borderline. Anyway, not all of the US is like this re. Medical care. It sucks that where you’re at blood work ranges are strictly followed. There are patients atty fall outside of the ranges and if symptoms warrant, treatment is/should be pursued.

If I were you, I’d take up the vet’s offer. Especially of your primary in fact suspects Lymes. Waiting til July for her to fall i range puts her and prolongs a state of inflammation. You can still consult with her p[rimary and let him/her know what you’re doing and talk about dosing, treatment, etc. Then in July run labs again.
Going to Duke for what your primary may already suspect may put you out financially for a treatment and diagnosis that is already suspected. Even if you reach out to Duke, you may still have to wait til summer. Chronic inflammation and elevated immune response while still on steroids and waiting til July does not sound like a plan treatment most primary physicians would recommend, IMO.
I didn’t read through all the thread, but in case it is also Gout, cut out reed meat, regardless of whether you decide to treat her with doxi.

Good luck and please keep updating.
(( warm and supportive hug to you ))
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cgd5112 wrote: Wed Apr 03, 2024 8:14 am I’m sorry this is happening.I think I mentioned Lymes in the other thread.

My friend had symptoms that were all over the place. Her primary put her on doxi. Her labs were not indicative of Lymes , but she was borderline. Anyway, not all of the US is like this re. Medical care. It sucks that where you’re at blood work ranges are strictly followed. There are patients atty fall outside of the ranges and if symptoms warrant, treatment is/should be pursued.

If I were you, I’d take up the vet’s offer. Especially of your primary in fact suspects Lymes. Waiting til July for her to fall i range puts her and prolongs a state of inflammation. You can still consult with her p[rimary and let him/her know what you’re doing and talk about dosing, treatment, etc. Then in July run labs again.
Going to Duke for what your primary may already suspect may put you out financially for a treatment and diagnosis that is already suspected. Even if you reach out to Duke, you may still have to wait til summer. Chronic inflammation and elevated immune response while still on steroids and waiting til July does not sound like a plan treatment most primary physicians would recommend, IMO.
I didn’t read through all the thread, but in case it is also Gout, cut out reed meat, regardless of whether you decide to treat her with doxi.

Good luck and please keep updating.
(( warm and supportive hug to you ))
Thanks! I'm just really frustrated. It just feels as if none of the practitioners have any sense of urgency and seeing your 100lb daughter with ankles and knees the size of tree trunks just feels urgent. Our vet is out of town but will return next week and is going to give her a 3 week course of doxy. In the meantime, I'm sending her to our local holistic clinic for a hair follicle test and exam.
"The books that the world calls immoral are books that show its own shame." - Oscar Wilde
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My 24 year old was just diagnosed with fibromyalgia (I don't know if it's the right diagnosis but it's what she has for now) after dealing with debilitating pain since she was 16. In my experience doctors don't listen to female patients and only really care if it's something that will actually kill them within the next 24 hours. Honestly, I'd take up the vets offer if everyone thinks that's what it is.

Her partner, who is biologically male, complained to their doctor that they were experiencing pain in their back and their doctor scheduled imaging for the same day. Turns out they'd just over exerted their back at training.

So a 23 year old bio female was told that we all have pain and she should tough it out with some ibuprofen and a 23 year old bio male was given tests and pain management for a strained back. Some days the female was in so much pain she couldn't get out of bed without help.
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