cactus
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posted
Feeling like a newbie here, and I'm far from it... go figure.
Can you help me think this through, bart gurus?
I have a teen in my life (adult, but still a teen) who is experiencing major psych symptoms. He has just received a diagnosis of bi-polar and severe depression.
Obviously, the psych symptoms are the biggest issue, so we have been dealing with that for the last several months.
He frequently complains about back pain and joint pain, but it is difficult to tell what is actually real and what is fantasy. He has some truth-telling issues and has seen me sick for years, could be for attention, could be real?
There are sleep issues as well - staying up too late, as well as oversleeping once asleep. Hard to say whether that's a part of the overall psych picture or something else. Lots of lethargy.
I have this lingering sense that bart is at play here. Just an intuition. But enough that I feel we shouldn't leave this stone unturned.
Several years ago, he came home from a camp in MO covered in what he called "chigger" bites. I was concerned at the time, but could not do much in the way of making health care suggestions.
No known tick bites, but... we all know that isn't necessary.
I would like to help him get tested, but don't know how.
My LLMD is not taking new patients, but I think (hope) that I could beg to have this teen seen. It would mean a wait of several months though.
Would testing through his GP be an option? What would you have ordered, test-wise, if you went this route?
I had a clinical bart diagnosis, and simply don't know the best lab for testing, or if a GP would be willing to order these tests based on something so vague as back pain and psych issues.
What do you think?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Hoosiers51
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Hi!
My opinion.....could be Bart, could not be.
The only thing that sounds suspicious to me really is the joint pain. That is what makes the situation unusual for someone with just run-of-the-mill mental illness.
Back pain is pretty common in the general population, and LymeMD said on his blog that it shouldn't be considered a warning sign for Lyme, etc. I agreed with his point on that, the way he made it on his blog.
If he is staying up way too late, then he might not technically be oversleeping, if that makes sense (if he is only getting like 9 hours of sleep or less). He could have have something called Delayed Sleep Phase Syndrome (DSPS), which could be more common in people with mental illness (not sure).
The only reason I know about DSPS is because I have it. But I also have Bart, so who knows. I pretty much consider my Bart in remission though, and my DSPS is still really bad.
I wouldn't test through a GP....because if it's positive, then what? Would they be willing to treat him, and would they know how, etc?
I dunno, it is a tough call. Would depend on how expensive the LLMD is, who the LLMD is, etc. You'd hate to see someone end up paying tons of money for a disease they don't have, so it would have to be an LLMD that doesn't charge a lot in the beginning, and that wouldn't look at the situation with Lyme googles, since that isn't the main concern, etc.
Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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sixgoofykids
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posted
I had Lyme, babs and bart. My husband never had any Lyme or babesia symptoms, but I do feel the bart may have been passed on to him. His ONLY symptom is sore feet in the morning.
He took a round of Humaworm last time I did. Humaworm people say it can hit bart, at least that's what someone told me. Anyway, since Humaworm, no more sore feet for hubby.
Humaworm is easy and inexpensive. You might try it before you move on to the next step.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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cactus
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posted
Hi, Hoos! First off - that is awesome that your bart is in remission! I am doing a happy dance for you!!!!
I agree about the back pain - it just feels very vague. In fact, I question everything - and wonder if this isn't all just mental illness related, as there is a history of mental illness in his family.
Sleep issues are certainly a part of depression and I would imagine come into play with bipolar issues. Your description of DSPS is right on target.
Six, thanks so much for reminding me of the sore feet. I have not once heard him mention sore feet.
And hesitate to ask directly because I don't want to put it onto his radar if he's not experiencing it.
If it were an issue, I think he'd have made it known. And that makes me breathe easier.
What a great result of taking Humaworm - that is really cool. I might mention that to him, and see if he'd be open to doing it. Great idea!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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nefferdun
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posted
The labs only test for two strains of bart so test results are often a false negative. Therefore your teen needs to see an LLMD that treats according to clinical symptoms.
BUrrascano says when neuro symptoms outweight physical symptoms, suspect bartonella. MANY bartonella infected people are diagnosed with psychological conditions and even institutionalized. It is unfair to suspect this is behavior or imagination. Healthy teens are very independent, not seeking to be tied to their care takers.
I did not have the classic symptoms of bartonella such as streaks on my skin or painful feet. I did have insomnia and pain in my back, both of which your teen has. Some of the other physical symptoms I had were/are muscle twitching,painful shins, cramps, need to urinate frequently, and headaches.
Feeling detached, unmotivated, irritable, disconnected, anxious and "stupid" are part of bart. You are very forgetful especially of nouns.
A good way to determine infection is to examine the skin for tell tell bart changes. Is there any swelling that resembles edema but does not dent when pressed? What about indentations in the skin or marble size nodules under the skin that you do not notice until you find them and press them - they are tender.
Is there any discoloration in the skin? Pea size brown spots, loss of pigment or red streaks - marks resembling stacked clams, chicken wire or stretch marks? Do you see what resembles tiny blood blisters, bruises, broken veins, spider veins?
It also deeply affected my mind and emotions. I am sure if it was ignored any longer I would be diagnosed as mentally ill by now and that is what frightens me the most about it.
When you treat it expect very strong emotional herxing.
If he has bartonella he probably has other infections as well which account for the symptoms that are not bart like. The diseases will take turns being dominate making diagnosis difficult. That is why you need to see a very good LLMD.
I feel for him. Glad you posted and hope you can find help for him.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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sixgoofykids
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Yes, I think if it's *only* bart, it's significantly easier to treat, just in my non-medical opinion. My husband hasn't had the sore feet since. Your teen surely would have mentioned it, apparently they really hurt bad. I never had that symptom, so I only know from what hubby told me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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cactus
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posted
Nefferdun, thanks so much for your thoughtful reply - it helps to hear your experience with this. You articulated my fears very well.
This is simply too big to let the mental illness diagnosis stand alone, without exploring other options as well.
I am more aware of his psych symptoms than the physical issues, but I will find out about the other symptoms you mentioned. He does have skin issues, so your description will help.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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sixgoofykids
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Has he been tested for KPU? It can be the cause of mental illness. Google pyroluria and you'll learn about the connection. It also sets the stage for becoming susceptible to illness.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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cactus
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Great idea, six!
He has a basic GP - would KPU testing be out of the realm of a traditional GP? What would be the best type of doc to get him tested for KPU?
I will search for it as well, since there are tons of posts, but if you can point me in the right direction that would be great.
The simpler I can keep the explanations for the need for testing, and the process, the more likely it will happen.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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sixgoofykids
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Gosh, I don't know about testing with regular doc .... not sure, but I posted a couple good articles on the "What is KPU" thread.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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cactus
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posted
Thanks, I'll start with that thread.
I think we'll need more than his GP, so at my next LLMD appt I'll ask for some guidance on local docs to do the right types of testing.
What a great lead.
Knew you all would be able to help!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
I would also have him tested for KPU Pyrroluria,like Six mentioned. Bart does have a lot of emotional symptoms and.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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cactus
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posted
If anyone thinks of any other possible (physical) causes for psych symptoms with bipolar-like manifestations... I would love any leads.
Just to rule out any physical - and possibly curable - causes for the mental illness.
Could be a pipe dream, but since bipolar is a diagnosis that will require life-long medication and care... It seems like a good idea to investigate all possible causes.
Thanks for all the help!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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tick battler
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posted
Sorry your teen is having such a hard time. I have read numerous accounts about how people diagnosed with bipolar disorder later find out they have lyme and coinfections. If it were me, it would be the first place I would look because if treated, I think it will probably not be a life long thing.
I believe it is becoming more and more accepted to think that there could be some bacterial or viral cause for psychiatric disorders. One such example is with borna disease virus, which is linked to psychiatric illness.
I have also seen the psychiatric manifestations of these diseases with my family. Depression, hyperactivity, aggression, OCD, anxiety, emotional instability, etc., have all been part of it for our family. In fact, the psych issues are now pretty much the only symptoms left in my young boys. They are still infected but the infection load is lower so that there are no more headaches, joint pain, etc. But those other symptoms used to be there.
The lab that found bart H. in all 3 of my children was Specialty labs. I think Quest owns it...you might call the pediatric Dr. J's office in CT to find out how to get testing done through that lab. He is the one who uses that lab. It was very cheap and was the most accurate bart test we had. Fry labs also picked up both bart H. and bart quintana in two family members.
I'm sure you know that if he has bart, it is very likely that he has lyme as well. I would not discount the joint pain or the back pain. I think that is a huge red flag. I don't think one would make that up. One way you can find out more from him is to ask him if anything hurts. That is how I found out a lot from my young children. I noticed that often if I didn't ask, they wouldn't say anything.
One other thought...try giving him some herbs to treat and see if there is any reaction. You might ramp up slowly on Samento and then Cumanda. Both can hit bart and lyme. If so, that would be another red flag pointing towards lyme, bart, etc. I have also seen psychiatric stuff coming from babesia. I think all of these diseases can affect the proper functioning of the brain.
Hope this helps.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Depending on what source you look at, 50% of people (or more) with biplolar may have Pyroluria (KPU/HPU).
They used to believe pyroluria was genetic and when it was discovered it was caused the mauve factor because scientists had to find which urine was from schizophrenics. These scientists were able to extract this distinct mauve color from their urine if my memory serves me right.
It's becoming apparent that people can also get pyroluria from infection. I think it may not be truly genetic (epigenetic?), and it can be cured by basically restoring your zinc levels.
It's believed that 80% of those with chronic Lyme may have pyroluria. Without adequate levels of zinc, your immune system is highly ineffective since white blood cells need zinc.
It's in the financial interest of the pharmaceutical companies and our establishment to make people believe there is no cure for these diseases. Most doctors believe the pharmaceutical companies, and most doctors (such as psychiatrists) have no idea you can correct these conditions. You can't really blame them though because even though we have the internet, information suppression is still working well. Those who dig deep enough can find the truth, but there are not very many of us.
While I don't think the questions in this quiz are great, it still may be worth a look.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Just a quick thought.....It kind of sounds like borderline personality disorder, in a way. A lot of people with bipolar have more than one mental illness anyways (another co-morbidity), but I'm not sure if borderline is under the bipolar spectrum or what.
Anyways, when I think Bart, I normally think rage, uncontrollable emotion, or extreme mood swings. I'm not sure if the overly dramatic, needy (borderline personality type) symptoms are related to Bartonella or not, but I wouldn't rule that out. Because when I had Bart, I was very dramatic and needy....but it's hard to know if that was just my bipolar which may still be there.
I was also diagnosed with bipolar (whether it's a legit diagnosis considering I have/had Bart is still to be determined, since certain psych symptoms are mostly better), and as I mentioned I have DSPS...
....I don't really want to speculate what could be going on, since I'm not a psychiatrist, doctor, etc. As someone who had/had Bart, I could see how this could be Bart, but by the same token, as someone who has beaten Bart.....I could see that certain psych things are just genetic.
Haha, I'm rambling. Gotta go though! Good luck.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I would probably suggest a bloodslide from Clongen Labs. At $100 the test is pretty cheap. It will look for cocobacilli -- won't be able to identify the exact strain but if the test finds this shape of bacteria it is pretty safe to assume that they are seeing bartonella in my opinion.
Galaxy Lab offers a bartonella test but it is very expensive -- will look for many different strains. Can do 1 blood draw or 3 -- test costs at least $500 I think. This lab prefers to test patients who are not on antibiotics -- one reason hubby has not had this test done.
Hubby's bart symptoms were mostly G.I. and neuro -- seizure-like episodes and Parkinsonian tremors. A little bit of moodiness -- mostly negative thinking -- and some mild rage episodes. Never had sore feet. Only skin symptoms for him were cherry angiomas which showed up once when he herxed on babesia meds and had very high blood pressure.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
A slide test was very helpful for me as did see coccobacilli and of course bacteremia can not be dismissed as a normal finding. Other than being sick the only other positive finding was a non-diagnostic 41 kDa band for Lyme. This test guided me from Lyme to Bartonella and a repeat test showed there absence eg treatment was heading in the right direction. Regarding the slide test technique I do think the finger stick will produce more positives than a slide made from whole blood. Less oxygen in the hands and feet eg. capillaries and the bacteria and parasites prefer the lower O2 sat. For Malaria for instance one source reported a seven fold increase in the smear sensitivity when done on peripheral blood rather than whole blood from a tube. The trouble is in the US, in part due to CLIA most doctors offices will not even try to do a smear from the fingertip.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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posted
Chiggers which can transmit the tickborne diseses. That cements the need to be clinically and tested for TBD's.
with or without a seperate dx of psych disorders.
Many years ago I had major depression and anxiety disorder.
Bart symptoms were far and away worse. But I did not know it was Bart for months. I only survived the "pit of hell" as I call it by healing prayer.
Now a LLND is addressing it.
Yes they can take turns being dominant. I was getting better from lyme symptoms and Bart roared to surface.
nefferdun's list of the skin things. I remember the day my chest skin was clear of it and I realized then and only then that they were in this picture too!
"Do you see what resembles tiny blood blisters, bruises, broken veins, spider veins?
It also deeply affected my mind and emotions. I am sure if it was ignored any longer I would be diagnosed as mentally ill by now and that is what frightens me the most about it."
thought it was just my skin's way of being. Not. wondered why oh why I was in a pit of despair. Bartonella.
bottom line: rule out TBD's. The chiggers and symptomatic complaints. Even if he lies and was "normal". IMO.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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TF
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Member # 14183
posted
Cactus, bipolar disorder is an inherited disorder. So is depression. If you know of some relatives that were diagnosed with these illnesses, then he has likely inherited it. It often shows up in the teens.
Also, relatives may have these illnesses but self medicate with alcohol or other drugs. So, many avoid ever being diagnosed. You need to look into the family history looking for trouble with the law, alcoholism, drug use, time in mental hospitals, etc.
Seems you know of something already in his family history. So, the diagnosis seems right.
However, the back and joint pain don't go along with the mental illness. The sleep problem, however, is classic bipolar.
So, it is very wise to look into lyme and bartonella testing for him. These diseases will only make his bipolar disorder/depression worse. I hope you are able to help him. Having one of these diseases is bad enough. Two is almost unimaginable (lyme/bart and bipolar, for example).
Posts: 9931 | From Maryland | Registered: Dec 2007
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tick battler
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TF - I know that heredity is the current belief among mainstream psychiatrists...but I strongly believe that in many cases, there is no heredity issue, or perhaps it is lyme and bart that was inherited...thus causing the symptoms.
As you can see by the many posts on this message board, lyme and coinfections are the root of many psychiatric disorders, including bipolar. There are just too many people diagnosed with bipolar who then go into remission with lyme treatment.
Of course, many don't get the psych issues with lyme. But plenty of others do. I have seen it first hand.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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cactus
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posted
I want to thank each of you for your thoughts on this. I appreciate your taking the time to share on this topic - it's been very helpful.
He does have a genetic history of depression, alcoholism, and bipolar disorder, so there is certainly a strong probability that this is inherited. He is at the right age for a lot of these issues to manifest.
There is also the possibility that bart et al has been inherited as well, or that bart (or other infection, or KPU) is compounding his situation.
If there is an infectious component (or a KPU component) maybe finding it will lessen the impact of the other issues, or make them easier to treat...
[Sigh] Tough situation here.
Now we just need to figure out a reasonable plan to get all of this checked out.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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2roads
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Cactus,
Wow! If you had factored in stomach issues, like lack of hunger and acid indigestion, I would say I was raising your child.
Everything else is exact to a "T".
Now, you must understand that my daughter was pcr pos for Lyme and Bart at age 10. She is 16 now. No pos ID yet on Babs.
We treated the lyme 6 years ago, but the stomach remained. Biopsied and found pcr Bart through MDL back then. Got on a Bart med and the tummy went away within a few months. Drug free for 5 years.
Fast forward to now. We left a lyme endemic area. All the symptoms you mention were beginning most strongly 2 years ago, but I didn't recognize them until I got a call from the guidance councelor regarding behavior and depression. Then my daughter and I talked, coupled with her desire a year before to go see a LLMD. I could not excuse it anymore. We were both looking for answers.
We had used Motrin and heating pads for the back pain. Antacids for the stomach. I gave her more room and less conflict to figure out emotional things. Funny though, insomnia was one thing that never did quite completely go away even though it was much better. Didn't read into it too much. But like the 4 hour sleep nights and the light in her room that stayed on to sleep, those ^&*^&(*^0 Bart antibodies started coming back and up. They were doing so 3 years back, which I was not aware of. But after listing the mounting symptoms and getting the old blood work back pos that I wasn't aware of from Specialty labs, I was convinced.
Needless to say, we are back on Bart therapy.
I will let you know if it handles the complaints our children suffer from.
The possibilities are endless, but I am from the the east coast, and I can tell you, it feels very similiar.
Specialty Labs- bart testing. A positive IgG or OgM is possible for active infection.
Hang in there
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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nefferdun
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I haven't had this test done but it is recommended by Dr. S in his book The Lyme Disease Solution.
VEGF - vascular endothelial growth factor.
It measures a substance that is produced by bartonella to facilitate it's entry into the body tissues. Elevated levels often mean a patient is infected with bart.
But the VEGF can be lowered if the person is exposed to mold which would throw the diagnoses off.
I look back on my childhood with the realization that many of my so called mental/emotional problems were physical. If I had been correctly diagnosed my life would have been completely different.
I know my thyroid was affected by radiation treatments used during those times for stupid reasons. I had migraines, fatigue and insomnia from the age of 12.
I have ignored my air hunger because I had it since the age of 11 as well as low stamina which was blamed on laziness and hyperventilation. I was depressed but pretended not to be, and I had circles so dark under my eyes that people often asked if I was sick. Do I have babesia? Have I always had it?
It is easy to say it is in a person's mind but once you do, you are condemning them to a lifetime of suffering. I believe we should check out every other possibility first.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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tick battler
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posted
quote:Originally posted by nefferdun:
It is easy to say it is in a person's mind but once you do, you are condemning them to a lifetime of suffering. I believe we should check out every other possibility first. [/QB]
Well said nefferdun...I couldn't agree more.
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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