HELP - Family member has mental/medical problems for last year or more - Undiagnosed Lyme Disease?

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SearchingForAdvice
New Member


Date Joined Mar 2017
Total Posts : 4
   Posted 3/9/2017 8:22 PM (GMT -6)   
We are searching for advice/direction for my 52 y/o brother-in-law who began having mysterious health problems over a year ago. I typed his symptoms into a Google search, and found a site with a long list of symptoms that can be caused by lyme disease, and he has probably half of these symptoms. He lost his job about 18 months ago while living the Lake Tahoe, California area, where they have been known to have lyme carrying ticks, although he denies knowledge of any bites.

After he lost his job as the general manager of a hotel, he wrote it off as his just not being ready for a managerial position. He had been middle management at another hotel for years in another city, and had no problems. After his dismissal he moved back to his previous city, got a job as a desk clerk at another hotel, and within a month he was dismissed from that job as well. We live out of state, and could not see him in person to realize his problems. We heard through his friends that he had lost weight, seemed depressed, etc....so we wrote it off to his having lost his manager job and then just couldn't handle the desk job due to stress.

Right after he lost the second job, he rear ended someone in his car, and the car was taken to a body shop. Then he lost his cellphone, was wandering through a neighborhood looking for a friend's house. He apparently mistook someone else's house for that of his friend, and the residents there saw him walking around on their property and called the police. When the police arrived and asked to see his ID, he found that he had also lost his wallet. He was put on a 48 hour psychiatric hold. Family members who lived several hours away traveled to his city to find out what the problem was. When they found him, his apartment was in disarray, and he wasn't speaking normally. They wondered if he had had a stroke or some other event. He had never had any problems like this before.

They put him on a plane and flew him to our home, which was the best course of action we could think of.....so that we could regroup and figure out what his problem was and get some help. He has been with us for about a year now, and we still don't know what caused this change in him. Yesterday I typed several of his symptoms into a Google search, and the top hit I got was a site about Lyme disease. It had a long list of symptoms, and he seems to have several dozen of these symptoms. He doesn't think he was ever bitten by a tick, but we have been unable to get a definitive diagnosis. He has been to a neurologist, an internist, and two psychotherapists, and the most common diagnosis he got was bipolar disorder. I see many more symptoms he has on the lyme disease list than I do on any bipolar disorder list of symptoms. I'm hoping that if I give you some of the symptoms he's exhibiting, that someone might give us an opinion.

From what I've read so far it appears that there is no definitive test for proving if you have lyme disease. Is this true? After I give you his symptoms, I'm hoping someone might also know what other disorders could cause these symptoms besides lyme disease....and if there is any way to test to find out exactly what is going on. Naturally, if he does have lyme disease the sooner it is treated the better. I'm hoping there is a way to zero in on what the actual problem is.

Here are symptoms I saw on the Lyme symptoms list that I think he is experiencing:

* Brain Fog (he used those exact words I believe….said he feels like his brain is in a fog)
• Brain block when trying to focus
• Head unclear, can’t remember, thinking off
• Anger and frustration
• Medical tests have turned up negative
• Difficulty thinking and processing information
• Difficulty planning and organizing
• Difficulty problem solving/decision-making
• Difficulty seeing or taking in the whole picture
• Difficulty multi-tasking
• Difficulty thinking quickly or responding quickly
• Saying something without processing it correctly
• Difficulty making calculations
• Slow processing of information
• Difficulty learning new tasks
• Difficulty maintaining focus and concentration
• Easily distracted
• Inattention, trouble sitting still
• Impatient
• Interrupting others in mid-sentence
• Difficulty in expressing ones self. Difficulty in word finding. Halting speech. Stammering, slow, hesitating.
• Difficulty keeping up in conversation or understanding what is being said. Disrupted participation in conversation.
• Declining performance in work
• Difficulty chewing? ( I see him making chewing motions with his mouth when he’s not eating)
• DIGESTIVE SYSTEM DISTURBANCES
• Stomach upset
• Bloated belly
• Unusual constipation
• Bowels stop working for many days
• NIGHT SWEATS (he said he awakens every night drenched in sweat)

Since he has been living with us, he held two jobs briefly and was dismissed from both. He had trouble learning the necessary components of the jobs, difficulty making decision and simple computations (making change as a store clerk). He is generally cleerful, but gets annoyed and angry when he doesn't agree with what you're saying. His speech is somewhat slow and halting. His whole personality is just different from how it was before, like someone with a mental disability. Also, he has had lots of problems with quivering in his hands. He has trouble doing any hands-on work, and struggles just to figure out where to begin when trying to accomplish a task. He didn't have any of these problems until the last 18 months as far as we know. He has also had lots of problems with his digestive system. about six months ago he told us he was having trouble urinating. His abdomen became very distended, and we ended up at the emergency room. They had to put in a catheter and drained off 3500 ccs of urine I believe it was. He was released from the ER with a urine bag attached for three days or so. Since then he complains that he urinates too often ("I can't retain water") and he blames it on the catheter and bag he had for three days. He's also had many episodes of constipation. He tried fiber (Metamucil), which didn't seem to help, stool softeners, and finally several enemas. He has borderline constipation on a chronic basis now it seems.

Well, what do you think anyone? He doesn't have any savings, and his only medical coverage is Medi-caid, so I hope we won't need to spend a lot of money trying to chase down what the actual problem is. Any advice would be greatly appreciated!

Post Edited (SearchingForAdvice) : 3/9/2017 6:34:10 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33882
   Posted 3/9/2017 8:34 PM (GMT -6)   
Hi SearchingForAdvice!

I'm sorry for what your BIL is experiencing, but so glad you found us here. I think he needs to be tested for Lyme disease.

For $210 he can have a Lyme WB IgM and IgG done. This is done through Igenex Lab in California. If you call them, they will send a test kit for free.
Then just take the lab req to a Dr. to sign...and get blood drawn - Fedex to Igenex...early in the week.

It's best he is evaluated by a LLMD.

We can help you find a LLMD - just start a new thread titled; "Looking for LLMD in/near_____" and fill in the blank.

Also, you can contact me and I will check my list of LLMD's and send you what I have for the area you are looking.

We encourage all new members to read through the "New to Lyme?..Start Here!" thread. (at the top of the page)

I want to thank you for supporting your Brother-in-law with this....it's wonderful he has you.
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33882
   Posted 3/9/2017 8:35 PM (GMT -6)   
Here's the link to Igenex:

www.igenex.com/Website/

If/when you do test - you can post the results on here...and we can help decipher them.
Non-Lyme literate Dr.'s usually won't have a clue about that.

It takes approximately 3 weeks to get the results.

You need to do the test on Monday or Tuesday, so that the samples get there before the week-end (Igenex is closed on sat and Sunday - and the samples will end up sitting all weekend)
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

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3828
   Posted 3/9/2017 9:39 PM (GMT -6)   
Hi Searching, I feel so badly for your Brother in law. It is really good that you found us.

In the meantime while you decide about testing and such, you might try to adjust his diet by eliminating sugary food(including fruit except berries and watermelon), & Dairy, although unsweetened almond milk is good.

Look at this list of symptoms that one can have if they have an overgrowth of yeast/fungus. Which is absolutely something that men can suffer with.

What is a systemic Y/FO problem?
Many of these symptoms are caused by a root Y/FO overgrowth occurring within the gut which must be addressed in order to affect these symptoms—research now proves the gut-brain link by blood vessels that connect the two and it is assumed the toxins in the gut also reach the brain, and leaky gut can also cause Y/FO and/or associated toxins to travel throughout the body:
Food sensitivities/allergies
depression
paranoia
anxiety
brain fog/heavy brain
cognitive issues – memory loss or word loss
muscle aches/weakness/heaviness
joint aches/pain/weakness
weak or sensitive nail beds, ridges, fragile (sometimes the nail bed can show as red, agitated and uneven or pull away under the nail)
nail fungus----not always indicative of a systemic problem
sensitivity to natural ingredients in particular areas of the body—for instance, when using natural deodorants on armpits people who have a Y/FO issue can create a yeasty rash (the giveaway is a yeasty odor) on the skin since it’s an area that is warm and moist—a perfect breeding ground for Y/FO

This is on the 2nd page of our intro and it's about yeast overgrowth/Candida.

This would help him out quite a bit, I think, and will clear the way for future treatments for Lyme and/or co-infections.

All manner of blood sucking bugs, including mosquitoes, flies and bedbugs are transferring Lyme disease now. It is also transferred through body fluids exchanged sexually. Though you'd be hard pressed to get the scientific community to admit it yet.
Moderator, Lyme Forum

Fibro diagnosed '85 Lyme (false?)positive '92,Osteoporosis, COPD, Hypertension, degen. disc disease, RMSF pos. Spring 2015, CHF, osteoarthritis. No LLMD. Used Doxy, Zithro and Flagyl since June '15, mono each time. Useless. Current treatment JK, Milk Thistle, kudzu for head fullness/pressure, avena sativa for nerves. Bragg's ACV, lemon water, Herbal de-tox tea.

Purrrsiankitty
Veteran Member


Date Joined Dec 2016
Total Posts : 1780
   Posted 3/9/2017 9:42 PM (GMT -6)   
Welcome. Your BIL is fortunate having someone like you researching to find out what may be causing his many problems.

This board is a great place to find the answers. Keep researching, you'll find the answers you need. Don't give up! Press on!
Dx May 2015 Quest pos Elisa/neg WB. Doxy only. Restest Igenix lyme pos, neg CDC, 18 +, **23-25 IND, *30 +, **31+, **34 IND, **41+, **83-93++. Retest12/16 Igen 41+, 83-93+ whole blood-plasmid pos. Retest Lyme/co's. Neg co's. Suspected Bart. 7/15 start 16 mo of doxy, azith, ceftin. Finished 09/16. Cowden start 12/16.

Invictus67
Regular Member


Date Joined Dec 2016
Total Posts : 32
   Posted 3/9/2017 9:46 PM (GMT -6)   
Hi, Searching.

Sorry to hear about your BIL's difficulties.

In addition to the Lyme-related tests already suggested, you may want to consider having his thyroid function tested, if it hasn't been done yet. I had many of his symptoms, which were due in part to hypothyroidism, likely secondary to Lyme.

Good luck.

jrpsf
Veteran Member


Date Joined Aug 2014
Total Posts : 1715
   Posted 3/9/2017 10:19 PM (GMT -6)   
Searching-We have another member who was bite in Lake Tahoe this past summer. So we know that the area does in fact have lyme carrying ticks.

For the most part ticks in California that carry Lyme are nymph ticks which are between the size of a pencil dot and a poppy seed. He wouldn't have noticed.

The catch with Lyme testing is that it's looking for antibody responses and Lyme has the ability to evade our immune system. You might want to do something that would help provoke an immune response before testing. People often use Olive leaf extract. It's my understanding that you take 1 capsule twice a day for 4 weeks. Then do the testing. During those 4 weeks you would have your BIL do detoxing (listed in the new to Lyme section) as it's very possible he will herx.

Getting a positive test versus a inconclusive or negative test will help you start your BIL on a path towards healing.

As a side note-Thank you for taking care of and dealing with your BIL under these circumstances. While I understand he's family, I also understand it isn't easy. Gold stars for you!!!!

jennydancingfish
Veteran Member


Date Joined Sep 2016
Total Posts : 887
   Posted 3/10/2017 4:39 AM (GMT -6)   
The night sweats could be babesia. It definitely sounds like lyme good thing you are investigating this! Also have his main doctor run a regular western blot. Please update us on his igenex and regular western blot test results. What state do you guys live in? Also please start figuring out if he has any food intolerances now like dairy or gluten. Also start a detox protocol
Currently with LLMD planning on doing modified Cowden Protocol and Buhner
Switched to this route after very bad herxing on rifampin
Diagnosed with Bartonella and Lyme. Twin has Bartonella and Mycoplasma and Lyme.
Twin improving on rifampin, zithromax, and tinidazole. Anger, rage, explosivity, emotional volatility, head and bone squeezing, sense of overheatedness all improved.

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2299
   Posted 3/10/2017 7:34 AM (GMT -6)   
Welcome, Just want to say I wish you all the best in finding answers to help your brother in law. It is so good to hear how your are helping him while he is ill. He is very fortunate to have you. Take care. Sincerely, Jo

trumpet123
Regular Member


Date Joined Apr 2013
Total Posts : 132
   Posted 3/10/2017 8:06 AM (GMT -6)   
I found this interesting list of symptoms. the Psychological Wellbeing is good. need to take things that cross the blood brain barrier

https://canlyme.com/lyme-basics/symptoms/

SearchingForAdvice
New Member


Date Joined Mar 2017
Total Posts : 4
   Posted 3/10/2017 9:58 AM (GMT -6)   
Thank all of you so much for your responses. We will follow through with testing asap, and I will post further as we hopefully progress in a positive direction.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 3/10/2017 12:07 PM (GMT -6)   
Hi SearchingForAdvice!
Welcome to our community! I'm very glad you found us, but I'm also very sorry to hear about your BIL.

If you haven't yet, please do read through our "New to Lyme?" thread as it is packed with helpful information.

I do agree that he needs testing, but with the amount of time that has passed, he may not be able to get a positive test, as the Lyme bacteria lowers the immune function and the tests all rely on enough antibodies being produced by the impacted immune system to produce those antibodies. Crazy.

You may need to see a really good LLMD that will diagnose him clinically (even the CDC says it's a clinical diagnosis), and start him on treatments before he can get a positive test - so please, do not wait on a positive test.

A person does not have to have a tick attach in order to get these infections, several other insects have been proven to carry these infections (deer fly and 2 species of mosquitoes so far) and many other insects have been implicated in carrying these infections as well.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

You can start a new thread titled something like "Looking for LLMD in the ​
(insert the nearest larger city & state)
area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

You can email the Tick-Borne Disease Alliance at
​[​​url]​medicalinfo@tbdalliance.org​ for LLMD referrals

You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​ ​
And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

SearchingForAdvice
New Member


Date Joined Mar 2017
Total Posts : 4
   Posted 1/9/2018 12:09 PM (GMT -6)   
I have a big update on my brother-in-law's case that I posted about here last March!

I had posted on 3/9/17 concerning my 52 year old brother-in-law with unexplained mental issues that had appeared two years ago as well as tremors and other nervous system issues who was being bounced from one medical office to another. They were treating his symptoms, but no one could figure out what the cause was, even after many lab tests.

I had noticed that many of his symptoms were common with lyme disease, and that led me to this site. I suggested to his parents, who were managing his medical care, that he should have a blood draw done and sent away to the Igenex for a complete panel of tests, including lyme. Instead, they mentioned the fact that he had lived in an area known for lyme carrying ticks at one of his medical appointments, and that clinic ordered one single lyme test, and after it came back negative they dismissed lyme as a possibility. His symptoms worsened. He had been diagnosed first as bipolar/schizophrenic. He had GI issues that they couldn't explain. Other clinics disagreed with that initial diagnosis, but couldn't come up with anything definitive, and basically just kept treating his symptoms.

A few weeks ago he had a first-time seizure at home, and was taken to the hospital via ambulance and admitted. A doctor there took an interest in the case, after hearing of our two years with no real answers. He said he would figure it out before his hospital stay was over.

At first the doctor suspected early dementia, which carried a bleak prognosis. Someone as young as him doesn't usually live very long after diagnosis. They ordered more tests...

He was given a brain MRI, an EEG, blood tests, and finally a spinal tap. The tap revealed an extremely elevated white cell count in his cerebral spinal fluid. The diagnosis came back as NEUROSYPHILIS. Apparently he had contracted syphilis probably 20 to 30 years ago, didn't realize it, and it was never treated. From what I've read about it, the first stage lasts a couple of months, the disease goes "dormant" for 20 years or so, then some people go into the "tertiary" stage. This is where Neurosyphilis can develop in maybe 30% of infected people. It can damage the brain, spinal cord, the heart, and other organs.

He was started on a penicillin IV in the hospital, which continued for a week at home after he was discharged. He was scheduled for 3 penicillin injections following that IV regimen. They said that he may regain some brain function that he had lost, but we'd just have to wait and see. He might just stay as he is now, able to walk around and do certain things on his own, but unable to cook, work, or care for himself completely.

The reason I'm posting this now is because I'm wondering if anyone has any other suggestions for us other than just waiting to see if he improves or not. He's being set up with a new primary care clinic and he'll be seen mainly by a nurse practitioner. He only has Medicaid now, and we're trying to get him on disability. I hope that the test he was given were adequate to reveal any underlying problems. I hope there are no other infections besides the syphilis. I hope they would have caught them if there were. Does anyone think he should still have any testing done at Igenex in addition to what he's had done already at the hospital? Would the spinal tap and other test have picked up anything else he should be treated for? Would the penicillin cure any other "coinfections"?

Thanks for any knowledge you can pass on for helping us deal with this situation.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 1/9/2018 1:46 PM (GMT -6)   
Wow interesting update!!! Thanks for coming back to share.

I do not believe penicillin will be effective for any co-infections. The night sweats make me think Babesia is a possibility.

I know next to nothing about Syphilis. I wish I could help you there.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33882
   Posted 1/9/2018 2:15 PM (GMT -6)   
My question would be - Do all the symptoms line up with the Syphilis diagnosis?

I'd want to do a lyme test...
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

cakegirl
Regular Member


Date Joined Nov 2016
Total Posts : 262
   Posted 1/9/2018 2:21 PM (GMT -6)   
I'd do a Lyme test too. I'd consider talking to someone Lyme literate even if IgeneX is negative. Lyme is a clinical diagnosis.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33882
   Posted 1/9/2018 2:46 PM (GMT -6)   
cakegirl said...
I'd do a Lyme test too. I'd consider talking to someone Lyme literate even if IgeneX is negative. Lyme is a clinical diagnosis.


I agree - appt with a LLMD.
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

JustPiccd
Regular Member


Date Joined Dec 2017
Total Posts : 84
   Posted 1/9/2018 11:18 PM (GMT -6)   
I would suggest seeing an LLMD to try and get additional Bicillin injections (injectible Bicillin that is used for both syphillis and Lyme). With Lyme, these injections are giving for a lot longer for neurological symptoms, 2-3 times a week generally, once a week minimum.

Read the book POX, a fascinating history of syphillis that is also really illuminating about untreated symptoms. Blanking on name of author but probably can find it based on that.

Not being able to retain fluids/peeing all the time tends to indicate lack of secretion of anti-diuretic hormone, which probably means hypothalamic-pituitary-adrenal axis involvement. Which makes sense, as syphillis attacks the brain and organs.

I'd second testing for babesia and personally shaking hands for me seen related to bartonella though I'm not sure which infection it is. An LLMD did note I had a hand tremor though and said it's common.

It seems like since syphillis is syphillis (which anyone can get of course, but sexual transmission is *known*) he should also test for HIV and do a full STD panel, as it can occur secondarily to HIV (which then, in a ping-pong effect, could make babesia or bartonella more virulent if he happened to have those too). HIV/AIDS is a treatable illness now though, and again, anyone can get it or any of this.

It's actually a pretty good "catch" that they figured out it's syphillis I think, since most doctors wouldn't think to look for it even though it notoriously causes a wide range of physical and psychiatric symptoms (it was the original "great imitator," what Lyme is called now, both spirochetal illness).

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33882
   Posted 1/10/2018 1:43 AM (GMT -6)   
JustPiccd said...


Not being able to retain fluids/peeing all the time tends to indicate lack of secretion of anti-diuretic hormone, which probably means hypothalamic-pituitary-adrenal axis involvement. Which makes sense, as syphillis attacks the brain and organs.



So does lyme.
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

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1302
   Posted 1/10/2018 7:34 AM (GMT -6)   
I would guess hidden dental infections and parasites.
Find a doc that has experience looking for and finding both.
My doc in St. Louis does both-its amazing how many americans have parasites that are actually pretty easy to treat. Same with dental infections. Search Prevention and Healing in St Louis

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2023
   Posted 1/10/2018 9:59 AM (GMT -6)   
I would suggest testing through Igenex anyway. If you can afford an LLMD, I would at least go for an initial consultation and exam and see what they have to say. If you're lucky enough to live in an area where there's more than one doctor to choose from, I would suggest emailing Girlie to ask if she has any feedback on those doctors and pick the one who seems the best. All LLMD's are not equal anymore than any other kind of professionals are equal.

I'm curious to know the accuracy of the syphillis testing. It's a spirochete like borrelia (Lyme). I don't know anything else about it except it's sexually transmitted. On the Lyme western blot, band 41 is part of a spirochete. Most everyone with Lyme seems to be positive on this band, but it can also be syphillis or a few other spirochetes.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 1/10/2018 10:53 AM (GMT -6)   
Wow - what an interesting update.

Instead of going to just a LLMD, I highly recommend going to a functional medicine MD (who is also a LLMD). Not all doctors practice functional medicine (but I would guess a lot of LLMD do??). A functional medicine MD looks at the big picture of issues and tries to find the root cause of issues - whether it's lyme, syphilis, etc.

I am fascinated about the history of syphilis. I had heard that it caused some extreme symptoms like lyme does, and people were put in mental institutions. But when treated for the syphilis, they were better. I'm interested in that POX book - I'll have to check it out.

It's good to rule out lyme with a better test that was provided. I prefer Advanced Labs personally (they will actually take a picture of the spirochete and send back to you in the lab report).
Although lyme is extremely problematic and goes undiagnosed for many people, it's also important to remember it's not the cause for everybody's ailments (sometimes it's overly blamed IMO). Having said that, I do feel it's important to rule in/rule out - but keeping an open mind that it could be something else. Perhaps it is just syphillis. I think treatment (and response to treatment), as well as future testing will help determine that.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 1/10/2018 10:55 AM (GMT -6)   
>> Would the spinal tap and other test have picked up anything else he should be treated for?

Unfortunately, spinal taps are well known for not being accurate testing for lyme (sorry).
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33882
   Posted 1/10/2018 1:05 PM (GMT -6)   
WalkingbyFaith said...
I would suggest testing through Igenex anyway. If you can afford an LLMD, I would at least go for an initial consultation and exam and see what they have to say. If you're lucky enough to live in an area where there's more than one doctor to choose from, I would suggest emailing Girlie to ask if she has any feedback on those doctors and pick the one who seems the best. All LLMD's are not equal anymore than any other kind of professionals are equal.

I'm curious to know the accuracy of the syphillis testing. It's a spirochete like borrelia (Lyme). I don't know anything else about it except it's sexually transmitted. On the Lyme western blot, band 41 is part of a spirochete. Most everyone with Lyme seems to be positive on this band, but it can also be syphillis or a few other spirochetes.


I was also wondering about the syphillis test.
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

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/10/2018 1:26 PM (GMT -6)   
Wow, how sad that he has suffered so long.

My heart breaks for him.

When I read your first post I thought of the mystery illness in Incline Village in the late 1980s. It is ME/CFS and it ran rampant through the lake area. Many unexplained illnesses and symptoms were popping up.

Daniel Peterson did a huge amount of research and found common ground among the patients. He is still at the lake and a friend of mine went there for a year for infusions. She is now totally fine and back to being out of bed.

Good luck to your BIL. He sure is lucky to have the family support!!
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